The Secret Life of The Special Needs Mom

The Secret Life of The Special Needs Mom

I am raising a child who is not my own.

He is my flesh and blood. I am his mother. He is my son. But for nearly all of his life, we have deferred to experts to tell us what to do with him. One of them says take him to this therapy. Obediently, we go. Another one says, no, what you really need is this program. So we turn around. A third one says, what you really need is medication. And off we go to explore that path.

Ultimately, every decision is up to us. And we don’t go blindly down any new road without consideration. But from the very first day I became a parent, my child’s life depended on the expertise of other people. I couldn’t help him. No one could show me how, not then. And so began his life, being raised by smart people with long, useful degrees.

Maybe that’s how every parent feels, even parents with typical children. I wouldn’t know. My atypical child is my firstborn, and I have only ever known this life.

My son gets a cough, and I take him to the doctor, knowing we will either go home or to the ER, depending what the doctors find. Depending on what they decide we will do. I am grateful to live in an area with so many experts available. I am grateful because my son is still not mine to raise, even at four years old. I don’t know what the right call is. Sometimes I can guess the right one. But it’s up to the professionals.

My son doesn’t eat well enough to keep him healthy, and I take him to the doctor. They tell us how to fix it. They tell us what we will do next. I nod my head and take notes and begin living this new phase of our life.

My son doesn’t walk the way he is supposed to, and I take him to the doctor. This is a problem that will have to be given to a new expert. They tell us to go to therapy. We are lucky to have these therapists in our lives. The therapists give us directions, and we follow them, finding ways to add exercises and build skills. Our days are busy, but they told us we need to do it all.

My son doesn’t go to many playdates. We should go to more, but we’re out of time. The experts told us we had to get so much done. There aren’t enough hours in the day. But we need their help for my son to thrive. We should go to more playdates. He would like more playdates. Maybe if I tried harder, he could. I should ask the doctors about that.

This is the secret life of the special needs mom. It isn’t a bad life. It isn’t a life to be pitied. It is a life filled with waiting – waiting for the next steps, the next lab results, the next expert to show us how to do better. We are glad for the help. We know we can’t do it without them. So we wait. We know we have to be patient. Waiting is the only way to learn where we will be sent next.

But it’s a strange thing, to raise a child who is not yours. Who is yours, but only between appointments. It makes us feel sad, and happy, and lonely, and loved. It’s a delicate balance. We must always be careful to schedule, but be flexible; be accommodating, but firm; juggle, but take time for ourselves. We must remember that all of this will be worth it, in the end, for our child to be the very best version of himself. We must know that perspective is key – we are not the only ones who suffer. We must learn to ask for help, and learn to do things on our own. We just have to try our best.

At least, that’s what the experts say.

I am raising a child who is not my own.

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Dear Target and Wal-mart: An Open Letter

Dear Target and Wal-mart: An Open Letter

Dear Target and Wal-mart: 

Hello, again. It’s me, Kristen. You both know me well enough by now, as I come to you both for such important things: Wal-mart, for your all-encompassing empire of every item I need, from groceries to home goods, at low, low prices; Target, for your almost supernatural ability to put me into a trance and to fill my cart with all sorts of crap I don’t need. We are all such good friends, aren’t we? 

However, lately I happened to notice that you were both lacking something that I very much need. I would even call it essential to my shopping experience. You have probably guessed it by now: Shopping carts with seats/space for more than one child. 

You see, I happen to have two children. And while one is technically capable of walking, he often finds himself unable to use his legs while he is lying facedown on the cold tile floor, sniffling pitifully after mourning the opportunity to throw his mother’s keys down for the eighth time. And so I find myself in need of a space for my second child. Well, actually, he is my first child, but he is the second one in the cart because I let him walk at first. See the previous sentences for further explanation. ANYway, this child needs a space, but, much like Jesus on Christmas Day, he finds himself with no room. So I allow him to sit in the larger part of the cart, where the groceries (also) go. While I am aware that this is highly frowned upon, as demonstrated by the creative stick figures drawn on the front of your carts, I don’t see a lot of other options. 

Except for one: Child-friendly carts. This is the kind of cart that allows you to secure your children far enough from the groceries as to not “accidentally” open every fruit squeeze they see, but close enough that you can see the children and the groceries and your purse and all is well. You have been slacking in the child-friendly cart department, Wal-mart and Target. 

Until recently. Recently I noticed that you both have joined America in celebrating multiple children and have employed carts that will allow two children to be strapped in at once! And while I want to be satisfied…well, I just can’t be until I point out a few minor design flaws. I know I sound picky, but let me explain: 

First of the all, look at the sheer size of this thing:

I have no idea what crystalandcomp dot com is. I just googled and found this picture. You’re welcome for the free plug, Crystal.

There are fully-grown sharks that are smaller than this. Turning this behemoth into an aisle would require a seven-point turn and a rearview mirror. And, if I did finally manage to turn it into an aisle, I imagine it would put me so close to the edge of the shelf that I, being without rocket-powered brakes, would find myself running full-force into a shelf of glassware (Wal-mart, you do have everything), which would then trigger a cartoon-like effect of all the shelves being knocked down in turn. 

If I do somehow manage to make it into a cart without reenacting a scene from The Mummy, I can only guess how long it would take me to reach the end of the cart to get the item I needed and get back to the front to rejoin my kids. What were left as two toddlers, waving goodbye as their mother disappears into the mist on a search for Diet Coke and pretzels, would likely be in middle school by the time I was able to finish my miles-long trek back to where my journey began. 

And while we’re on the subject, let’s discuss the size of the space between the children’s seats and the shopping cart itself. I’m no mathematician, but I would estimate that distance to be exactly the length required for an emergency room visit if a child fell out of the seat and towards the cart. “But we have seat belts attached,” you say. Oh, Wal-mart. Oh, Target. You dear, dear little lambs. Do you really think a mere seat belt can contain my children? My daughter, who I once caught gnawing ferociously on an empty rib bone, impeded by fabric? My son, who has used only the steely glare from his eyes and sheer force of his will to bring down grandmas and grandpas around the world, stopped by shoulder straps? Oh, no, no, Target. Think again, Wal-mart. My children specialize in escaping confinement. My son is so skinny he can fit underneath a door. My daughter’s fine motor skills are unparalleled in the tri-state area. They will escape. And when they do, they will get the pleasure of either smacking their little heads on the plastic bar of the cart, or, a fan favorite, the comfy metal grating of the cart. 

Sure, sure, I should be watching them. But I’m still on the Never-Ending Journey down the aisle, remember? I won’t be back for years. 

My final complaint is this: Lack of entertainment. Right, I know –  kids these days with their entertainment and their lack of ability to sit and think about stuff. And there is no way in my right mind I would give my kids a phone or tablet to play with while I shop (not because I am against it… it’s because I can’t afford to replace a phone or tablet every time I shop). However, at other stores with kid-friendly carts, the carts are a bit more, shall we say, whimsical. My kids can be police car drivers, or firefighters, or hot pink taxi car…I’m not totally sure what that one is, but you get my point. They turn the fake wheels and honk the fake horns and everyone leaves with a smile on his or her face. 

Without these things, my kids have only one thing left to turn on: Each other. (DUN DUN DUNNNNNNN) I might get to about the third item on my list before the hand-slapping begins. Item seven will bring pterodactyl screeches and “NO, BABY. BE NICE.” Soon, shortly before item 15, they will each begin to emit a low whine that will rise steadily in pitch until only dogs can hear them. And me. Somehow I can always hear them. 

So you see, Target and Wal-mart, some elements of your new carts require some modifications, just as soon as you’re feeling up to it. But, speaking as the mother who is trying to convince her two-year-old that the big part of the cart is “totally super cool,”…please hurry. 

XOXO, 

Kristen “I SAID SIT DOWN OR NO ICE CREAM” Eleveld