Am I doing this right - Parenting a special needs child

3 years ago

I am not an indecisive mom. I’ve had my after the fact “should I have done that?” kind of doubts but I rarely question myself in the moment. But with everything in life, there are exceptions.

The backstory: Peanut has a plethora of medical issues (I love using words like plethora because they make me sound smart). In addition to his congenital stuff we’re still coping with his nutrition – he is still undernourished and very tiny for his age. Today his size 18-24 month shorts were falling off his itty bitty booty like a gang banger (he’s 4). Ah, but what gang banger wears “George Pig” underpants?   We’re also on a catch-up schedule for shots.

So, we go to the doctor a lot. A LOT. We have generalists and specialists. We have labs and follow up labs. Rare is the week we don’t have some kind of medical crap going on. I should have my own parking space at the hospital. I’ll work on that.

You might think all this would be routine for Peanut. You might think since he sees so many doctors, nurses and med techs that all of these visits would be no biggie. Uh…no.

We can’t drive past the hospital without him announcing “there my owie doctor”. (The developmental specialist is referred to as the “toy doctor” or “my favorite doctor”. Everyone else is “owie doctor”).

Pulling in the hospital parking lot = bring on the screaming. Not crying. Not fussing. Straight up glass shattering screams. Is it live or is it Memorex? Nope. It’s my kid and everyone hears him coming. People in the hallway part like the Red Sea. I get equal parts sympathetic glances and dirty “you must be doing something wrong” looks.

The screams continue until we’re done with whatever torture is on the agenda. As soon as Peanut gets the verbal “all clear” he’s fine. Ready to collect his sticker or lollypop and get the hell out of Dodge, but fine.

I’ve tried distracting him with toys, games, and snacks. I’ve tried singing, playing games like “I spy” or engaging him in chit chat about stuff we see or fun things we’re going to do after. I whisper to him about whose outfit I think is tacky and promise him ice cream when we’re done. Nothing works. The only thing he wants to do is sit on my lap, give everyone in the room the stink eye, produce loads of snot and chant “no doctor, no owie”. Loudly.

Sometimes all of this gets us seen faster. Peanut screams so loud that it literally disrupts normal business. I admire any tactic that gets me out of the waiting room faster but this is so not worth it. The only thing I can do is batten down the hatches and weather the storm of screaming till it’s over. Then he does a 180 and everything is super peachy.

I’m at peace with how I handle his actual medical visits. If you have ideas on how to make this easier, sure, bring ‘em on, but my dilemma is in how to set the stage for these visits in the first place.

He’s 4. It’s not like he’ll understand “okay son, we’ve got to get some labs drawn next Wednesday, so be thinking about that. Want a popsicle?” He does understand “we’re going to the doctor today”. Aside from “toy doctor” everything medical is b-a-d in his eyes.

If I tell him “we’re going to the doctor today”, I deal with screams and tears until it happens. I can tell him 30 minutes prior or 2 hours prior.  My choice on how long I want to hear the screams.  There is no distracting him, so no, this isn’t something I can tell him until shortly before the event. The storm is just as powerful but it is short lived. But this kid is too smart for me.

Today we had to take Peanut to the elementary school for a vision screening. He’s being evaluated for educational services this summer in the hopes of having a solid Individualized Education Plan (IEP) by fall. With all of our medical cray cray  craziness, you’d think an eye test might have been on the menu somewhere, but no. It doesn’t matter that this kid can spot his dad’s car a quarter mile away and can clearly spot the bag of cookies half-ass hidden behind the junk piled 2 feet high on top of the fridge. School controlzs all the thingz and they said we had to have an eye test. So, eye test it was.

Since Peanut is going to be spending some time at the school this summer, I thought I’d talk it up. “Hey honey, we’re going to BIG SCHOOL tomorrow to play games and do some work! Won’t that be fun?” Of course, this set off gales of tears when Doodlebug (my other 4 year old) found out he was not going to big school but that’s a whole other story.

Peanut was suitably excited about going to big school. While I was preparing the mounds of paperwork that go along with this adventure, I discovered it was time for another shot. Damn!  That’s always super fun. NOT.  All mommies know that shots are the gateway to school admittance and there was no way around the side trip to the immunizations clinic. There is some kind of faculty Saint Peter waiting in the registrar’s office bellowing “you wanna come in here? Fess up them there shot records!”

I had planned to slip the “hey, we’re going to just pop by the doctor first, sweetie pie” in as I pulled in to the hospital parking lot, but Peanut started getting suspicious before we even left the house. Maybe he heard me talking to the Hubs about the day’s agenda, but I think I was careful not to say “doctor” or “shot” out loud. Maybe he’s telepathic or maybe I’m just unlucky.

Peanut asked me if we were going to the doctor about twenty minutes before we left. I told him yes that we were going to the doctor for a minute and then we’d go to big school and have fun. The meltdown started. The litany of “owie doctor” started. Between the yelps he would pause to say “no owie doctor mah-mee?”

I struggle with how to handle this every time. Do I tell him we’re not going to the doctor only to prove myself a big fat liar when we get there? Do I assure him that it isn’t going to hurt when I know darn good and well that he’s going to be held down and jabbed with needles?

It’s been a long 9 months but this child trusts me. That trust is still fragile and while telling him lies would make for a more peaceful car ride, I can’t risk breaking that trust.

I don’t know what to do. If there is a way to prepare Peanut for a visit to the doc, I haven’t figured it out. Springing things on him at the last minute doesn’t seem to be the ticket, either. I think he knows that he’s safe with me but really, how secure can a kid feel when his mom hands him over to someone who pokes and prods him on an almost weekly basis? His outraged little face and his pleading “mah-mee?” when the lab tech is digging to find his tiny little vein shatters my heart in to a million pieces. My head knows I’m doing what is best, but my heart says “you’re an ass”.

Is Peanut equating mommy love and the security of a family with really bad stuff? Because when you’re a tiny little guy shots, blood tests and sometimes even the piece of cloth that wraps around your arm and squeezes you like python seems like really bad stuff. Strange people in funny clothes are violating his personal space and giving him owies and I’m sitting there telling him it’s OK.

When I ask “am I doing this right” I don’t mean am I doing the right thing by ensuring my child has appropriate medical care. Of course I know I’m doing the right thing but I’m starting to question my approach in preparing Peanut for medical stuff. His frequent flyer days at the hospital are far from over.

Maybe there is no easy way to cope with this. This feels like inept maternal muddling through. Maybe I need to cut myself some slack and say “it is what it is” and keep forging ahead and doing my best. I honestly don’t know the answer to the question I posed at the beginning – am I doing this right?

The morning ended on a happy note. After the required shot we made our way to “big school”. We just went for a quick look around and a vision test that gets him in the door for more testing but lemme tell ya – school and Peanut are peas and carrots.

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He ran inside with the zest for life I’ve come to admire. Right off the bat he decided he had to pee, so for the first time ever he used a public bathroom without me accompanying him. I mean, it was the elementary school boy’s restroom. I felt weird going in so I didn’t. And he did fine.

Peanut tried to get in line with a group of second graders and was pretty P.O.’d when I wouldn’t let him go with their group. We went to the nurse’s office where he wowed us all with his ability to pick out letters and match colors. He correctly ID’d the letter “C” and said “cow, moo.” I was even surprised. “No problems with his vision” cheerfully claimed the nurse. Well, duh.

On our way back to the car, Peanut and I talked about airplanes, Texas and coats. He told me I was his best friend. I don’t often get to spend 1-on-1 time with any of my kids and despite the crappy way our morning started, it ended kind of nice.

If you’re looking for a mommy blog chock full of “our life is so grand” parenting tips, you’re pretty lost. The question “am I doing this right” is still up for grabs. But, I’m doing it. One day at a time. And that, my friends, is all I have to say about that.

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