Beds and Screenings

When you’ve got three kids, you pretty much feel like most of your Big Adulting milestones are far behind you, especially if you’ve got three kids, a spouse, and a house. You’ve finished whatever schooling was expected of you, you’ve got married, you’ve signed papers for a mortgage, you’ve done your taxes, you’ve had a job or two or ten, you’ve had kids, you’ve ticked so many things off the list that it’s easy to forget other smaller milestones that come along the way.

Like buying appliances. We bought appliances for the first time when we bought our house, as the previous owners planned to take the fridge with them and the dishwasher had a color scheme and serial number that suggested it had been manufactured in the 1970s. In those halcyon days before Sears became a memory, we wandered through the Kenmore section and chose our appliances in black, not because we had an affinity for black appliances (honestly, stainless steel hasn’t gone anywhere for years, so that would have made more sense) but because the one remaining appliance–the stove–was black and we wanted things to match.

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(this is literally what our old dishwasher looked like)

That was nearly four years ago, and this week, Kyle and I checked another milestone off the list that we didn’t realize was a milestone: we bought a bed.

It’s not our first bed, obviously. We started our married life with an inflatable mattress that lasted three months and was perfectly fine for sleeping and marital activities until one night in August. We’d been sleeping soundly until very, very early in the morning when Kyle shook me awake and asked, “Do you ever have that sinking feeling?” And lo and behold, we were in the process of descending to the floor as our inflatable mattress ceased to be so inflated. We discovered, once morning came, that the mattress had somehow acquired insurmountable holes and was no longer suitable for use by anyone. 

SO we eventually shuffled off to Big Lots and bought the cheapest possible queen mattress and the cheapest possible frame and, like the very talented young marrieds we were, didn’t even bother with a box spring. And for the next eight years, that mattress worked very well for us! Or… mostly well. In the last year, the bed has begun to show the strain of belonging to two fat people (one of whom, we discovered this week, has gone down 6 pant sizes–not me, but one of whom!). 

(it’s Kyle, he’s down six pant sizes)

And admittedly, a lot of the recent strain on the bed, at least on my side, came from the twin pregnancy making me enormous, which put pressure on the springs and turned the bed from delightful and comfortable to misery. The springs had reached a point where they were poking my hip violently throughout the night, and poor Kyle has been dealing with lower back pain for ages, which made everything harder than usual. 

So a new bed. We’ve had a recent windfall of money, thanks to Kyle’s family, and while they were up visiting this week, we wanted to actually shop for a bed, not just go to Big Lots and buy the cheapest and easiest thing in the store. Fortunately for us, my cousin works at a Mattress Firm and was able to give us the Sleep System Experience (I don’t know if it’s actually called that, but it is now). 

And, you know, it really felt like an adult thing because the consideration was less ‘we need this, let’s just get whatever we can afford’ and more ‘what will last us and ensure that we have a good night’s sleep for years to come?’ That, really, was the adult part, where yes, affordability was a concern, but we could afford to consider quality as well. 

We tried out beds like a pair of lumbering Goldilockses, and in the end, we walked away with a pretty nice mattress and an adjustable frame (which I wasn’t sold on until my cousin put it in the “zero gravity” position for us and we both kind of groaned in relief like “ah yes, I remember being 18 and not having back problems”). Both were delivered on Saturday, along with lavender sheets (Kyle’s color choice, and I’m not complaining, purple is awesome) and a comforter that was listed on Amazon as being steel grey but is really one of the many shades of poop we’ve encountered over the last five years of being parents. And I’ve added to my “must buy” list a headboard (preferably one with a bookshelf) and a less poop colored comforter and maybe some throw pillows BECAUSE we got a king-sized bed. 

I never thought we’d need a king-sized bed, even though Kyle and I are both generously sized. We’ve slept in king-sized beds while traveling before, and though we’d start the night spread out and on different sides and laughing about how much space we had, we’d inevitably end the night wrapped around each other in the middle of the bed because I guess we like each other or something? And even with Kyle’s height (he’s 6’4”), a queen seemed to suit our needs perfectly. 

And then we had kids. 

More specifically, we had one kid grow old enough to leave his own room in the middle of the night and come into ours for, oh, any number of reasons. Lately, it’s because he’s just lonely, because my son is nothing if not a people person (he’s going to do so well in kindergarten… I hope), but it can be anything from nightmares to a stomach ache to he suddenly thought of a story to tell us. When he was smaller, I didn’t mind him in our bed because he could easily snuggle between the two of us, and we could all sleep comfortably. 

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Now, though, Sam is creeping ever closer to the four-foot mark, and having him in bed with us had become… well, difficult, we’ll say. It was the worst when I was pregnant with the twins, because of course, I was a small moose and Sam was clingy, but there was just no space in the bed for Kyle AND Sam AND me AND the planet that was my huge belly. We brought him back to his own bed most nights, but that wasn’t an ideal solution because he’d need a long discussion to get him back in the mood for sleeping in his own room, which meant that one or both of us would miss out on a lot of sleep. If we’d had the space, we’d have just let him sleep in the bed with us, but…

Well. I’m no longer pregnant with twins (a fact I’m grateful for every day), but Sam is even larger than he was before, and his midnight jaunts to our room haven’t slowed down in the least. For a while, with our bed being the disaster it was, we set up a little nest next to the bed, and he’d just hunker down there, content to be in the room with us, even if not in the bed; but that always gave me “wow, I’m a shitty mom” vibes–me in my comfortable bed and my son on the floor in my room, as if he didn’t have his own bed.

(his own bed, despite having a kind of cheap mattress, is very nice–it’s a sleigh bed, even, which has me envious as I click through pages of headboards on Wayfair)

The bed invasions won’t stop, and I don’t really want them to. I’d read an article a while ago about a woman who’d bedshared with her son and how people would always snidely remark about how “you don’t want him in your bed when he’s a teenager” and while she no longer bedshared with him once he’d reached his teen years, she made it clear to him that her room and her arms were always open to him, without judgement or condition. And he heard her and she was the one he came to when he had a broken heart or a difficult time at school or any number of myriad things teenagers deal with.

We didn’t really bedshare with Sam when he was a baby (both of us are paranoid about rolling over in our sleep), but at the same time, I want him to know that he’s always safe with us, whether it’s sleeping in our bed or sitting on the couch between us or buckled in the back seat of our car. I want that for the twins, too, when they’re old enough, whether it’s because of a bad dream or a bad thunderstorm. That they feel safe and comfortable with us is absolutely paramount for me. 

SO! King-sized bed it is. Maybe, eventually, if we ever transfer another embryo and get a dog and more cats and who knows what else, we’ll get another king and push them together like some sort of magical giant frankenbed, but for now, we’re enjoying the HELL out of this adjustable king-sized bed.

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On the other side of things is Isaac.

Isaac, my beautiful smiley little boy, my unexpected middle child who’s cuddled his way into my heart so deeply and irrevocably, my adventurous snugglebug whose smile could cure cancer. He’s been developmentally delayed–and officially labeled as such–since he was about four months old, most of that coming from (a) some torticollis and (b) that he was born six weeks early. We’ve had him in Early Intervention for that since about that time, and for a while, he was progressing by leaps and bounds, going from a potato who could only look over his right shoulder to a rocket baby zooming around the living room at the speed of sound. 

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But lately he’s kind of stalled. It’s not a big deal, honestly, because babies do that. They go through a developmental leap and they stall, they gain 15,000 skills over the course of one (long, sleepless) weekend and they pause. It’s more noticeable when you have twins because they never stall at the same time (and this stall happened while Carrie busily learned to stand on her own and take small, uncertain steps), but stalls still aren’t unexpected. At worst, I figured, we could just speak with the Early Intervention team and see about getting him some physical therapy or occupational therapy so that he’d keep up with his sister in terms of walking and talking.

He’s also a rocker and a bouncer, constantly moving himself in almost violent back and forth movements, sometimes mashing his face against something and other times mashing the back of his head against something. He can’t fall asleep unless he spends a decent amount of time on his hands and knees, rocking back and forth while dutifully sucking on his Wubbanub. And to be clear, babies rock and stim a lot, because the world is new and they need to experience it from all angles. Rocking is soothing for babies, too, and for the most part, it didn’t worry me. 

But something in my brain pinged that maybe I should worry, just a little. After all, we have Early Intervention anyway, and they’ve always told us that any evaluation the twins need, they’ll do for free. With that in mind, I asked the twins’ caseworker to bring an ASQ, or Autism Screening Questionnaire, with her when she came to our house next.

The ASQ is a series of what felt like six billion questions that you answer “always/often” or “sometimes” or “never” and your kid gets scored based on your answers. I don’t remember the scoring specifically, but I do remember that 65 was the cutoff for further testing. Carrie, who had her six month evaluation today, took the test first and got a 30, which is numerically the equivalent of “might possibly be the inverse of autistic, like citsitua” and that surprises exactly no one who’s ever spent time with her. She lives for sensory stimulation of all kinds and is about as neurotypical as a sixteen-month-old baby can be. 

Isaac, on the other hand, scored a 95, which is numerically the equivalent of “at least two autisms, possibly even three.” 

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Fortunately, our caseworker and our physical therapist (who was there for Carrie’s evaluation) also had a copy of the M-CHAT, which is the next step in autism screening. Its proper name is the “Modified Checklist for Autism in Toddlers” and it’s basically the exact same thing as the ASQ, only with fewer and more streamlined questions. With that one, a score below 8 suggests a mild or moderate concern, while 8 and higher suggests that further evaluation is warranted. 

Annnnnnd Isaac scored an 8.

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So we’re moving forward with his autism screening, with our EI office’s autism specialist coming in the next couple of weeks to have a playtime evaluation with him, just 10-15 minutes to see if he should be fast-tracked to an evaluation program, a process that can otherwise take months or even years (which I think is absolutely ridiculous BUT there’s probably an enormous backlog). And I have feelings.

I was pretty weirded out (in a good way) by the questionnaires hitting on questions I wouldn’t have even thought to associate with autism, like questions about constipation or increased muscle tone or “have you ever wondered if your baby was deaf” among the more typical ones like “does your baby have good eye contact” or “does your baby perform repetitive motions?” And I’m relieved for those questions because at the end of the day, you don’t have to be a completely nonverbal Rain Man type to be autistic. Isaac has great eye contact and likes people… but he also has no sense of stranger danger, doesn’t have any real words, and is often very stiff like he can’t stand to be positioned any way that’s different from his current position (which makes diaper changes a blast). 

The idea of one of my kids being autistic is also unsurprising to me; it runs in my family as much as brown eyes, enormous knockers, and astigmatism do. Though my younger sister is the only one in my immediate family with an official diagnosis, the rest of us easily fall into the category of “had current diagnostic criteria been used when I was six, I’d have a diagnosis and a half.” Kyle’s been telling me for ages that I should see a doctor to be officially diagnosed, and honestly, if things move in a more autistic direction with Isaac, I probably will. 

I mean, there’s a lot to it, and so much of treatment and diagnosis nowadays focuses less on what it’s like to actually be autistic and more on how autistic people interact with the world around them. In my experience, and from what I’ve read, a lot of it relates to the usual filters in your brain just… not working the way they do in neurotypical brains. A neurotypical person might easily be able to filter out things like the scratch of a shirt tag, the sound of the air conditioner, the flickering light in the corner, the smell of a long since cleaned spill, the taste of dry mouth, but it’s honest effort to filter those things out when your brain works autistically, and so you’re always on the verge of reaching a level of overstimulation that doesn’t much come for the neurotypical brain outside of the throbbing, psychedelic dance floor of a local club or Disney World on Christmas Eve.

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It’s exhausting. Some days, I reach the end of the day and just need to zone out completely, sit in a dark room and breathe. I have a hard time socializing outside a quiet or one-on-one setting because trying to figure out which voices matter and which ones don’t is really hard. Online or when it’s just with another person–especially someone I know well–I follow conversations very easily, but beyond that, I tend to spend my socializing time towards the edge of a room, counting down the seconds until I can leave.

But anyway. The point of all that is to say that if Isaac is autistic, I’m glad that he’s got me to advocate for him. This sounds really smug and haughty like “ha ha, my autistic child could not have a better parent than I, for I am the best of the parentals!” but it’s really more like “how fortunate to have been born to a mom who understands exactly how his brain works because it’s how her brain works.” It means I’ll be able to help him recognize when he’s getting overstimulated before it ends in a meltdown and help him find ways to cope with the loud, brilliant world that won’t lead to his complete ostracization. It’s like a vision impaired or hearing impaired parent having a child with a similar situation: they’re able to help better because they’re in the thick of it with their child. They know how to navigate a world that’s going to be harsh for their child because of the situation of their birth, in the same way that all parents teach their kids certain things about functioning in the wide world.

So overall, I’m pretty chill about it, but I do have two fears: therapy and Autism Moms ™.

They tie into each other, really. With therapy, I fear therapeutic approaches that, instead of teaching Isaac to cope with the world, will instead train him to appear neurotypical while ignoring what’s going on in his brain that causes the atypical behaviors. I’m not interested in tweaking his behavior; if he needs to stim, I want him to feel confident enough in himself that he can do so. I am, however, interested in teaching him coping mechanisms so that the world isn’t too much for him. 

Related to that… the Autism Moms ™.

Not every mom of an autistic kid falls into the category of Autism Moms ™. When I think Autism Moms ™ I think of the Jenny McCarthy type, the type wailing about autism stealing their child away from them, the one who will try bleach enemas and raw diets and anything to “”””cure”””” their child’s autism. 

I never have good encounters with these types (and they are incredibly common on parenting websites and forums). Things usually start off calmly enough but end with me trying to get it through their thick skulls that kids who have autism are STILL PEOPLE and THEY STILL HAVE EMOTIONS and maybe saying “I wouldn’t wish my autistic son on my worst enemy” IS A SHITTY THING TO SAY. 

Fortunately, the vast majority of autism moms I know are not this type; they’re fantastic advocates for their kids and respect that their children are PEOPLE, that autism is less tragedy and more “well, I just have to adjust my style and expectations like you do with every kid.” But I still fear the Autism Moms ™ because I know my feelings on autism aren’t super popular with them, and I think I’d probably get torn a new one for being really calm about my son potentially being autistic (like… ?? am I supposed to freak out and cry and sob? What is that going to change?). I want to have a village, but I do not want THAT village. 

So I focus on things like the Autism Self Advocacy Network and the #ActuallyAutistic tag on Twitter, and I’ll keep doing so as we all move forward with this. Fingers and toes crossed that we’ll be able to have Isaac evaluated soon and know one way or another, but either way…

Well, he’s my sweet little baby elephant, exactly as he is, no matter how he is.

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