A LOT TO TALK ABOUT

Hi, so life is busy.

Well, no. It’s busy but it’s also not. It’s fallen into this nice routine but I’m tired all the time, which is unpleasant and probably the fault of the nerve medication I’ve been on for a year at this point (more on that in a minute), but it also means that by the time I reach the end of the day, I’m a noodle who isn’t very good at writing things. And I have so much to update on and so much to talk about but again: noodle, living in a constant state of no bones.

So life. 

The kids have been in school in person for coming up on three months now, and it’s mostly been a pleasant time. We’ve had… mm, I want to say three Covid scares? Two that were everyone and one that was just Carrie. It’s a weird thing because I don’t like to send my kids into school sick anyway, but now in the time of Covid, you can’t just not send them to school sick, you also need to get them tested. And I am okay with that, just so we’re clear. It’s a pandemic, kids have only just started to get vaccinated, and I’d rather know one way or the other. 

BUT it does take a day home with a head cold to five days home because we couldn’t get in to get tested until 12 on Wednesday so the results aren’t back until 10 on Friday, so we’ve missed the last three days of the week plus the weekend, and by that point, all three children have gone completely feral and are jumping from couch to couch to couch to couch while scream singing “Grace Kelly” by MIKA.

Thankfully, our school has recently implemented a “stay and test” option for people who are just close contacts, but that does nothing if your kid has the vague “maybe it’s a cold or hay fever or Covid?” symptoms, so we just check everyone’s temperature in the morning and get really caught up in the mitigating circumstances of each and every symptom (e.g., our kids are hot sleepers, so if one seems warm but they were in bed all night, we wait another hour after they get up before doing a temperature check). 

Kyle and I are both triple vaccinated, so even with ominously named variants popping up all over the globe (seriously, if they’d just gone with Omicron from the start, I feel like this entire pandemic would’ve been taken a lot more seriously. Like I’m not saying that Covid isn’t a threatening name except it very much is not a threatening name), we’ve both felt comfortable and safe enough to go to the movies again and go out to dinner again and mostly resume our normal lives, sometimes with masks and sometimes not. And despite the handful of Covid cases in our schools, both of us feel pretty safe about our kids being back in person (and all three have IEPs, so even if schools went remote again, they’d end up taking the in-person option anyway, whee). 

Being back to school in person has benefitted Sam so very much. We weren’t sure how he’d take to it, since it was a full year away, but the phrase “like a fish to water” comes to mind. He picked up right where he left off with his best friend Hunter, and he’s made new friends (Declan and Eamon) in his class. His teacher has nothing but good things to say about him, even taking into account his reluctance to put away his scissors sometimes and his adorable motormouth tendencies. He comes home constantly with stories about the games he played at recess (apparently, Among Us is popular with the kids these days, which… okay, cool, it’s literally just Mafia, but cool) and the time he spent with his friends, which is enough to make my heart feel warm and mushy, but THEN you add in that he got the highest scores on their classroom testing in math and ELA and I’m just. Beyond proud. Is there a way to be beyond proud, because that’s me. I’m beyond proud.

I also feel a weird sense of pride because, as it turns out, Sam is also autistic.

Roughly around this time last year, his therapists asked us if we’d ever had him tested, which we hadn’t. Sam and Isaac are both similar in that, while they’re both definitely autistic, they’re also both really social kids. They like to make friends and be involved with other people, but where Sam was in daycare from the time he was a year old, Isaac was home with me. Isaac was also notably delayed from the start because he was a preemie, whereas Sam would’ve just stayed in for the next ten years if the doctors had let him. 

Anyway, we didn’t ever have Sam evaluated for autism because he’s such a social kid, and he learned from very early on that socializing means eye contact and it means language and it means doing things that autistic children typically aren’t seen doing. He had his pickiness sometimes and his need for routine, but we figured that was just typical toddler stuff. 

And then the pandemic.

And a fun thing with neurodivergence is that when those of us who fall under that umbrella get stressed, we don’t mask as well. Our divergences become more and more apparent, and as a result, people start to notice. 

The pandemic was stressful for everyone, and it was particularly stressful for Sam, who had his routine and life upended overnight and never quite found his footing again. Early on, we had him seen by one therapist who recognized that he has ADHD (both inattentive and hyperactive type, because we like to cover all bases here), and once he started receiving in-person therapy, his new therapists agreed with that and said that he also seemed to be autistic.

SO. 

It took a whole goddamn year to get him an evaluation because everything is absurdly backlogged and you can’t do an autism evaluation virtually. We went for the first available slot in Boston, and an hour and a half later, the doctor said, “Yep, autistic” and sent us on our merry way with a bunch of emails and links and information and suggestions about therapies and what-have-you. 

And, real talk, Sam is excelling so much in so many ways that I’m not super interested in pursuing therapy unless he asks for it. Talk therapy, sure, because I think that helps a lot with a lot of things. But ABA (gag)? Anything besides the OT he already gets? Nah. I think he’s doing pretty well on his own, and the diagnosis mostly just gives us a tool and a shield that we can use to say, “okay, because of this diagnosis, you cannot deny him services.” 

(not that our school district WOULD HAVE denied him services, but just in case)

Anyway, he’s doing SO well that we’re actually shifting his services to an “as needed” basis, meaning that he’ll still have the help if/when he needs it, but he’s transitioned so smoothly and is doing so well that we don’t need to force it on him. And my god, he’s happy again. Last year, it was like a cloud over him, but this year, the sun’s back and it’s so beautiful.

My health is also on the docket of things to talk about. A year ago this weekend, I was in the ER with nerve pain so bad that I couldn’t do anything but scream and shake, and in a logical world, they would’ve pushed me through getting an MRI and surgery ASAP because nerve pain that bad is a major red flag for nerve injuries that could become permanent damage.

But.

I got sent home with meds, celebrated Christmas and New Year’s, then saw a doctor in January. The doctor said it sounded like a herniated disc but I’d need an MRI to be sure, but the next available MRI appointment wasn’t until March. I would’ve taken that appointment, but it fell on the same day our insurance rolled over from one to another (not that the new insurance covered the MRI anyway?), so the MRI got pushed out to late March. Then I saw the doctor again in April, and he gave me the option of either getting injections to ease the pain while the nerve healed or having surgery. I said I wanted surgery, so I got to see ANOTHER doctor in May, and we scheduled the surgery for July.

So it’s already been eight months with this injury and things not really getting better, right? And then Kyle’s company laid off his entire department literally two weeks before my surgery and we had no insurance, so I had to postpone the surgery to August. And THEN we were in this kind of song and dance with MassHealth, where nobody was really sure if we’d be able to stay on it once Kyle received his unemployment payments (note: we still have not received unemployment payments), so we postponed the surgery indefinitely until Kyle got a new job and we were on that new insurance.

September rolls around, and Kyle gets his new job and good new insurance, some of the best we’ve ever had. I call to make a new surgery appointment, but first, I need a new MRI because it’s been, at this point, six entire months so who knows what’s going on in there? And I pay roughly the same for the new MRI that I did for the one with the shitty insurance, but whatever, right?

Within 24 hours, the doctor calls me back and says, “hey, you have zero herniation left. I’d do surgery on you, but it would be pointless because there’s nothing to remove. All you have to do is just wait for the nerve to no longer be inflamed.”

To get a clearer picture, I ask, “But what about the fact that I cannot feel anything on the inside of my left thigh and also at least two and possibly three of the toes on my left foot take a good thirty seconds more to get the message that I want to move them than the rest of my foot?”

“Oh, well, those are probably permanent, but in 90% of cases, the pain goes away completely within a year of pressure coming off the nerve.”

SO LET ME GET ALL OF THIS STRAIGHT. Because of insurance issues, I had to wait and wait and wait and wait on my surgery to the point where I’ve now been left with permanent damage and pain that has an okay chance of disappearing completely but nobody is really sure when that will happen?

I’m on this nerve medication, gabapentin, that makes the world completely fuzzy. I’ve been on it for a  year. You’re not supposed to be on it more than a few weeks because it makes you sleepy and messes with your memory (not permanently, thankfully, just while you’re on it). I don’t know when I can come off it because I don’t know when my herniation stopped pressing on the nerve because I had to keep putting off the surgery again and again and again.

And like. I don’t want to get into it about universal healthcare, but I’m pretty sure that my waiting would’ve been cut in half if I hadn’t had to change health insurance five times in the last year.

Whatever. I have an appointment on December 13 to talk to the surgeon and discuss my options. I want to see if I can get hydrotherapy of some sort to try and take some pressure off things, and I really just need to find a decent and quiet gym and go there in off hours to walk and slowly bring myself to a healthier level of activity. I’ve been in so much pain the last year (and still am sometimes) that activity feels daunting, but I need it to heal, and I need to find a way to do it that won’t scare me away. 

Meanwhile, I’m just keeping myself in a floating state of planning mode. Planning Halloween (Sam was a ninja and the twins were Spider-Man and Ghost Spider). Planning my birthday and a trip with two of my best friends to Cape Cod in the off season (was delightful but also very cold). Planning Christmas. Already thinking ahead to the twins’ birthday. Planning road trips. Planning planning planning. 

Planning that extends kind of far out as well, but only kind of. 

Kyle’s new company has some really great insurance, you see, and through it, we were able to cover PGS for our remaining embryos from the cycle that gave us Isaac and Carrie. Unbelievably, six of the seven embryos were healthy and there are exactly three boys and three girls.

Which brings us to the age old question of WTF are we going to do with all of these frozen babies?

I want one more. Not twins, please god not twins. I love the twins so much, and about 50% of the time, I love that they are twins (the other 50%, they are beating the ever loving shit out of each other for reasons that I do not understand, so I’m like, why couldn’t you be born one at a time so we’d have some buffer space?), but I physically could not do twins again. But I’d love one more girl as a coda.

BUT not for a while yet, if we did. Kyle isn’t fully onboard, which is fair because the twins are a LOT right now, and if someone dropped a baby in my lap right at this second, I’d be like, “WHY DO YOU HATE ME SO MUCH????” because I cannot infant right now. If we went ahead with one last transfer, it would be in 2023, no sooner. Too much is going on in 2022, and my health isn’t where it needs to be.

But it’s on the table now, and we didn’t know if it was on the table before. It was a daydream and now it feels like it could happen? I don’t know if it actually will, but it’s there. One last girl. 

Maybe.

Or maybe a puppy instead. I don’t know.

Parting Clouds

I feel like this blog has been an absolute downer for the past year, though understandably so. The last year has SUCKED. I don’t think anyone had an objectively good year last year (except Big Daddy Elon Musk, but billionaires don’t count towards people having good years), and I was scrolling through my blog reflecting on how… just MLEH I’ve been about everything in the last twelve months. And again, completely understandable, but also I feel like that can’t have been fun to read. I’m sorry.

But here we are, encroaching on March 2021, one year of pandemic and social distancing and 500,000 people dying because assholes and masks and so on and so forth, and I’m actually starting to feel something that tickles a bit like hope. Real hope, not the false hope that kept popping up over the last year when people were naively like “it’ll be gone by summer!” or things like that. Real, honest-to-god hope.

After all, this is roughly the timeline they told us to expect back in mid-March of last year, when everything shut down and everything changed. Mid- to late-2021. We’re right on schedule. 

I’m getting my first Fauci ouchie tomorrow, 4:30 p.m. I don’t think I’ve been this excited about a needle since the first injection for IVF, way back in 2016. My state, dear old Massachusetts, has kind of bungled the process for people to make appointments–my dad, 68 and with a heart attack in his medical charts, hasn’t been able to get an appointment, so I’m refreshing all sites frequently to try and snag one for him–but by some flash of luck, I woke up the other day to an alert on my phone telling me that a CVS near me had appointments available. I fit squarely into Tier 2 of the second phase of vaccine rollout up here–obesity and asthma qualifying me as medically at risk of a Bad Time–so I signed up. 

And I’m ready.

(even if I’m a bit frustrated that Massachusetts hasn’t bothered to start prioritizing teachers yet while other states have and the websites to get appointments are basically strung together with some twine and duct tape and a few prayers and GOD, I wish I could take a hammer to said websites and get my handful of coding friends to rebuild them functionally from the ground up)

I have plenty of friends who’ve already been vaccinated for various reasons, ranging from frontline workers to teachers to people with medical issues and everything in between. Of that plenty, many have experienced the “your immune system is working” side effects–the aches, the fever, the chills, the generally feeling like shit from about hour 33 to hour 48 after the second dose. I’m ready for that. Kyle’s been keeping in touch with his boss about what’s going on, so with any luck, when I get the second dose, I can just coast through all of those side effects feeling vile but being mostly unconscious.

But I’m ready. I’m ready to not be afraid to go places besides Target or to not be afraid when I’m IN Target because the people behind me don’t seem to grok that six feet and six inches are not the same thing. I’m ready to feel like I’m not going to be putting myself in more danger if I have to go to the doctor for whatever reason (seriously, in the past year, I have avoided going to the doctor so many times I probably shouldn’t have because I didn’t want to accidentally expose myself). I’m ready to hopefully not be a link in a chain of people getting sick (like we don’t know yet that the vaccine prevents or reduces transmission, but the science–even with the new variants–looks pretty good so far).

And I mean. When even the most conservative estimates have everything easing up by summer, it’s hard not to be hopeful, outside of the trenches.

(in the trenches is another story, and every time I talk about hope, I think of my friends who do work on the frontlines and wish that I could somehow have a million dollars each to give them so that they could go on the most luxurious, relaxing, magical vacations of all time. Like hell, wanna spend two months on sabbatical in Hawaii? Go nuts, aloha. French Riviera whispering your name? Au revoir, you amazing heroes)

I’m getting vaccinated tomorrow, and then the twins turn three on March 14 and start school on March 15. Sending them in person isn’t a decision we made lightly; even though the school they’ll be attending has had exactly 10 cases out of 300 students and about 50 staff (and none of them in the preschool), the risk isn’t zero. On the flip side, though, Isaac has stagnated and regressed so much since daily ABA stopped, and I HATE phrasing it like that because it makes his autism sound like this horrible thing, and it’s NOT, but at the same time, I can feel how badly he wants to communicate with us, and goddamnit, I can try with the rudimentary PECS and I can say the words and do all sorts of things as his mom, but because I’m his mom, there’s a lot I can’t do. I’m not trained or qualified to do so much of it. 

He really was making such incredible progress when he had ABA five times a week, and I know the language is there. And he wants to express himself and is SO HAPPY when we understand him. And preschool will give him an opportunity to be better understood, whether that’s vocally or through signs or through PECS. Whatever he needs. I just want him to not feel like he can’t be understood, because to me, that’s about as lonely and terrifying as it gets. 

And Carrie is something of a ragdoll. She’s clever and sweet, and where communication is concerned, she’s at age level if not above it. BUT when it comes to physicality, her muscle tone is almost comically low. She seems comfortable wherever she is, which is great, but she gets tired quickly because she has to put more effort into making her muscles work than a kid like Isaac (whose muscle tone has always felt high to me because he’s always. so. tense.) or even Sam does. It impacts her ability to use her fine motor skills with holding a pencil or getting herself dressed and undressed, and I have no doubt it’s impacting her digestion. In the long term, it’s going to cause problems for her–she’ll be in pain, and I don’t want that at all. And if we can get started fixing it now, if I can get her therapy now, maybe she won’t follow in my footsteps and end up in remedial gym or getting an MRI for sciatica and feeling like she’s in her 90s when she’s not even 40 yet.

Plus, they’re SO good with masks. It’s kind of surprising, honestly. I would’ve expected the twins to just hate wearing a mask and to fight it all the way, but the two of them are absolute champs. They even have Barbie and Hot Wheels disposable masks along with the other disposable masks I’ve gotten them for the remainder of the school year. I think we’ll be okay. I think they’ll thrive in school, and I think we’ll be okay. 

For the first time in forever…

…I can kind of see the rest of the year clearing up, like the way the sky clears up when it finally stops raining after a particularly long stretch of wet days. I feel like when I say, “when the kids go back to school in September…” I’m not doing some sort of wishful thinking; I’m saying something that will happen. When Sammy goes back to school with his friends, when the twins are in preschool five days a week, when I see my extended family for the first time since Christmas of 2019. WHEN, not IF.

Speaking of Sammy going back to school (WHEN that happens), I got in touch with the special ed department at his school to see if they could evaluate him for ADHD and autism or at least just to see if he has anything that would require an IEP to deal with in the coming year. His therapists have him on a waitlist to see if he can be evaluated outside of the school, but because of Covid, that waitlist is excruciatingly long–we’re talking years–and I don’t want him to start second grade at a disadvantage. I know that whatever else is going on, he deals with a lot of executive dysfunction and hyperfixation. I know that his mind goes so fast from one thing to another to another, I know that he acts like boredom is torture. I know that the idea of failing at something even a little brings him to tears, no matter what reassurances we offer. I know that if he’s asked any question about himself, no matter how benign, he shuts down and furiously refuses to answer. 

I don’t know what that all adds up to. I do know that it affects his schoolwork. That he melts down when something is hard for him, that it’s an absolute WAR to get him to do his social studies and reading. That he doesn’t focus, can’t really focus, even on subjects he loves. But give him Pokemon or Minecraft or the deep sea, and he will tell you everything in excruciating detail. That he’s terrifyingly smart–doing third grade math as a first grader and absolutely OWNING it–but that he needs someone to help him apply that intelligence.

And I don’t know. Maybe it’s that I’m not as good of a teacher as I like to hope I am. When he’s on, he REALLY gets stuff. He’s getting straight As in math without even blinking, and I think he’s doing okay with improving his spelling and handwriting, but I feel like there’s something about his learning style that’s out of my reach, and if nothing else, I’d like to see if the staff at his elementary school can identify it. 

SO. 

A lot on my plate. Again. I can sort of feel my sciatica flaring, but I’ve been more careful to take time off and be diligent with my medication because I am NOT doing that again. I have an MRI to look at it up close on the 8th, and until then, I’m just taking it all one day at a time and knocking items off my to-do list little by little. 

And feeling like the sun is starting to peek through the clouds. Which is nice.

The Final Countdown

The countdown is on, my friends: 39 days until the twins start preschool in our town’s integrated special education program.

I’ve had this countdown going for a while, but until Wednesday, it was unofficial. And admittedly, the situation isn’t ideal, but

Well, let’s start from the beginning.

Back in 2018, in August, Isaac started working with Early Intervention therapists because he had torticollis in his neck (which means that he had a hard time turning his head, probably as a direct result of it being firmly wedged up against my pelvic bone for the last 8 weeks of the pregnancy). He saw a physical therapist fairly often to gently ease him into having less of a stiff neck. About four months later, Carrie joined him in the arena of physical therapy, since she was being very slow in terms of gross motor skills. 

As time passed, both twins gained more services–occupational therapy, speech therapy–and Isaac was eventually diagnosed with autism; and then, Isaac started ABA therapy and did fantastic with that, too. Up until the pandemic, the services we had were doing a fantastic job ensuring the twins were progressing in their development at an appropriate pace, and they had even started attending a once a week playgroup so they could start learning how a classroom worked for when they started preschool.

Because, you see, the beautiful Commonwealth of Massachusetts pays for therapy up to kids’ third birthdays–that’s what Early Intervention is. After the age of three, though, the state stops paying, and you have to hope that your kid qualifies for special ed preschool or even with insurance, you’re going to be shelling out a LOT of money for therapy.

So anyway. The world tried its damndest to stop last year but failed to do so, and the twins’ third birthday is rapidly approaching. Amidst my planning for a nice, lowkey celebration (read: no party whatsoever, maybe just my parents coming over, cupcake flavors, presents all purchased), we’ve also been planning for that transition, because as of March 15, the twins’ services won’t be covered under Early Intervention anymore.

None of them. Not speech, not PT, not ABA. 

So about two weeks ago, we took the twins into our primary school for their assessments. It’s the same school Sam attended last year and will attend in the fall, and he was really excited and proud of it, talking about it as if he hadn’t been there in decades (“oh, yes, I remember the auditorium!” “of course, that’s the office!”). The preschool was set up in such a way that everything was absurdly spread out, which was a good sign; with OT and PT, we aren’t going to be able to keep the twins six feet away from everyone all the time, but seeing that the classroom was set up in a way that physical distancing was encouraged when it could be was reassuring.

During the assessment, Kyle and Sam and I sat at one desk off in a corner of the room while the twins played with the therapists in another corner. Carrie immediately took to the dollhouse they had and quietly set about tucking a plastic kitty she found into bed, while Isaac stood in one place and observed everything while smiling that amazing smile of his and making every therapist and teacher fall in love with him.

The whole thing lasted about an hour, maybe a little longer, and we were keeping our fingers crossed the whole time that both twins would end up qualifying for services. We never doubted that Isaac would–after all, he doesn’t speak independently yet–but we weren’t sure about Carrie. She’s behind, but her delays aren’t as obvious as Isaac’s, and her delays could probably be helped with a longer, slower path, if at all. 

BUT the amazing therapists saw exactly who our twinsies are and saw where Carrie was struggling and where Isaac was struggling and recommended that they both attend preschool five half days every week. 

And with the pandemic going on, I’d be reluctant to agree to that because there’s all these new variants making everything worse, and who knows when any of us will be able to get our Fauci ouchies, but today, we got the IEP with the breakdown of services.

If we leave out the preschool aspect (which would be roughly ~5 appointments per week), we’re still looking at $175/week for Isaac in copays and $125/week for Carrie in copays for all of that therapy. And they wouldn’t get that level of therapy outside of school, BUT a lot of it is stuff I feel like they’d really excel with having, stuff I never would’ve thought of, stuff that I don’t know they could get in an at-home environment because of the pandemic.

Carrie, for example. I’ve worried about her core strength and muscle tone for a while (she’s always been something of a ragdoll floppy baby–never in a way that makes you terrified, but she’s very good at molding herself to you), but never loudly enough to raise alarm bells to therapists and doctors. She demonstrated it so well during her assessment, though, that they planned for her to have just as much PT and OT as Isaac, and that’s a huge relief.

And Isaac has the full cocktail of services–PT, OT, speech, and ABA, all provided by the school. And I’m REALLY relieved. His ABA therapists have been great, but because of the pandemic, they’ve been really sporadic in their availability–going back to school, having to quarantine because a family didn’t bother to mention they tested positive, just unavailable because nobody wants to be going into homes these days. Giving him the opportunity to get those therapies in person five days a week… GOD, it’s just such a weight off my shoulders. He did so well with just ABA in the mornings from March through October, I can’t wait to see how he takes off when he’s getting all of these therapies all the time. 

So everything is in review, I am buying six billion child-sized surgical masks every week (they come with Barbie and Hot Wheels prints at Target!), I am waiting for a TON of paperwork from the school, and I’m feeling an honest weight lifting off me. 

39 days. There’s obviously some additional relief there, with me suddenly having MUCH calmer mornings than I’ve had in three years (let me tell you, in September, when we’ve all gotten our Fauci ouchies and everyone goes back to school full time and Kyle is commuting to the office 2-3 days a week and I’m ALONE for the first time since ~2013, omg, I am going to party SO hard, by which I mean I am buying a box of a dozen doughnuts after dropping the kids off and eating them ALL BY MYSELF and then enjoying the sugar coma until it’s time to pick the twins up), but most of it is a mixture of apprehension about Covid and relief about the services continuing with a much more consistent delivery that won’t completely bankrupt us. 

I’m taking my time processing it all, and in the meantime, I’m just quietly shopping for first day of school outfits. In March. For twins. Who are almost three.

Because I can’t make the pandemic magically go away (if only), and I can’t look into the future and see that these services will work out really well for them both, but I can make them both look hella cute on their first day.

Ob-La-Di, Ob-La-Da

This was going to be a long blog post about the inauguration and politics in general, but that leaves me feeling tired. Suffice it to say that I’ve breathed a sigh of relief, but I also acknowledge that there’s a lot of work that needs to be done, and I’m focused wholly on the future and how to improve things instead of bemoaning the immediate past. The past informs the direction that we need to take as a country (a wholesale rejection of white supremacy, measures to rectify massive wealth inequality, having an actual PLAN for the pandemic instead of just pretending it doesn’t exist so we don’t spook the markets, etc.), but I’m through arguing about the past four years. They were politically terrible. Let’s move forward.

Instead, because I don’t feel like getting my blood pressure up today, I’m talking about life overall, or life in our house, at least.

Because it goes on. Like I said last time, insurrections, elections, inaugurations, Bernie with his mittens, it all happens and it all affects you, but at the same time, life goes on. You read a headline, you feel angry or sad or hopeful (which is new), then you have to run to the post office or call the kids’ therapists or something or another. Maybe you discuss it, you sign a petition, you run to a protest, you donate, but life is going on with or without you.

Life goes on. 

The twins had their preschool evaluations on the fifteenth, and it went well, I think. They met with the entire preschool team, with the physical therapist running the evaluation while the others–the teachers, the SLPs, the OTs–took notes and observed. Kyle, Sam (who was there because we didn’t have childcare for him), and I sat in a corner of the room that was separate enough for the twins to not zero in on us instead of what they were supposed to be doing.

They started out pretty shy. Carrie warmed up to the situation first, when she saw that they had a dollhouse, because she is quintessentially what toy marketing execs want a little girl to be. She loved that the dollhouse had a little toy cat with a little toy toilet and a little toy bed, and she spent a great deal of time meticulously tucking the toy cat into bed or settling it on the toilet, not really talking about what she was doing, just doing it. She was SO quiet that the SLP had to come over and talk to us about her speech, and we talked about her on bad days–preferring one-to-two-word phrases over sentences, even though she CAN use sentences, and murmuring nonsense under her breath to tell you things. She’s very stubborn, so if you want her to talk to you, she just will not do so. 

She also, apparently, struggled with her fine motor strength–not her accuracy, but her strength, coping the OT’s movements with her crayon but not really applying a lot of pressure.

And, really, much of the evaluation was for her. Isaac’s struggles are pretty easy to spot and pretty easy to describe. He spent the first ten minutes of the evaluation standing stark still like a statue and smiling shyly behind his mask. Though he eventually warmed up, he’s mostly nonverbal still (which is more of a “behind” thing than a permanent thing–he’s about where Carrie was between 12 and 18 months, and I think he’s mostly stagnated because the pandemic has prevented us from having in person speech therapy for a year now. Like, we work with him, but we don’t necessarily know what to do to encourage him to, for example, speak independently instead of parroting us) and has exactly zero sense of danger, which combines poorly with his extraordinary fine motor skills. 

(which sounds kind of cool, but you don’t expect your two-year-old to figure out how to unlock a window, create a tower of stuffed animals to reach the lock, unlock and open the window about two inches, figure out how to open the screen, open the screen, and then start tossing his toys down from the second story window. That’s a surprise. So yeah, the windows in the twins’ room are duct taped shut now)

But the evaluation was both to get an idea of where Isaac is and to see if Carrie actually qualifies for the preschool’s special ed program. She’s right on the border where she MIGHT need the extra help, but she might also catch up with her peers by just being with them. It’s hard to say. And it’s not a huge deal either way–when I talked with the head preschool teacher over Zoom, she explained that Carrie will have a spot in the program no matter what, it’s just a question of whether she’s there for free as a special ed student or whether we pay the $140/month tuition.

And even that isn’t a big deal. When Sam was in preschool at the twins’ age, we were paying probably… mmm, I want to say about $200/week because it was a full time private daycare. Which I LOVED, but I can even point to ancient blog entries I wrote here about how I realized that having twins meant no more daycare for anyone. So back then, I was wondering “omg how are we going to even afford preschool for them, that’s $400/week, that’s $1600/month, how can we do that, that’s a second mortgage?”

The idea of both of them going and us only paying $140/month? $35/week? It’s kind of miraculous. And if it’s free, I’m just going to do a dance.

We’ll find out sometime this week how things went, and then we have a meeting on February 2 to set up their IEPs (or IEP if Carrie doesn’t need one). And that’s WILD to me. I’ve talked so much about IEPs with so many people (my sister always had one, my mother-in-law is a special ed teacher, one of my besties is an SLP, etc., and that’s not even counting the huge village of parents of children with IEPs who are like “yes, I will help you with this, I will tell you how I best advocated for my kid”) that actually diving into one is like

Let alone diving into TWO.

We’re very fortunate. Our town is apparently one of the best in the area for special education from top to bottom (which isn’t surprising; everyone here is some degree of wealthyish and it looks like fucking Happy Valley from “Mickey and the Beanstalk” and then there’s me with my overgrown ugly lawn covered in dead leaves like “oh yeah, I totally belong here!”), so while I know I’ll have to fight for a lot of things, I don’t feel like I’ll have to fight as hard as I would have somewhere else.

(like apparently, my hometown, which is just a few miles down the street from me, has one of the WORST special ed programs in the area. They used to be good, according to all of our therapists and contacts, but nowadays, things are just garbage from top to bottom)

It’s a lot. But I feel ready.

And life goes on.

And it might end up being THREE IEPs, anyway. Sam’s been having in-home therapy for a couple of months now to deal with, oh, a whole bunch of things. His anxiety had reached a point where he wasn’t sleeping in his own bed at all, he has days where he barely eats, he’s an absolute ping pong ball if he doesn’t have something with a screen drawing his attention… it’s a lot. Kyle and I had a sit down talk with the therapists over Zoom on Monday, and they suggested having Sam evaluated for both autism and ADHD. 

The autism bit has me a bit skeptical. They were noticing a lot of the outward signs, and I agree that Sam has a lot of sensory issues, BUT if he is autistic, he’s also the most adamantly extraverted autistic kid I’ve ever met. And that’s not to say that autism can’t look like that–it’s a sundae bar, after all, and you can have all sorts of weird varieties of stuff going on–but it’s just. I hate to say this because it’s so not clinical, but he doesn’t ping my autism radar the way Isaac did from ~day one. Isn’t that a dumb thing to think? Like “mom hasn’t ever gotten autistic vibes from him, not even a little” is not a good diagnostic criteria, and should not be used as a diagnostic criteria.

I took one of the screening tests for him, the one they use in clinical settings, and maybe I’m too close to him to see (but unless I’m missing something, I feel like a lot of these tests are just asking parents how their kid is anyway and then observing in a play setting?), but he scored way too low on the autism test to even warrant further testing. And again, maybe I’m just too close to the situation, but like. I can’t imagine I’m missing THAT MUCH, you know?

Now, on the ADHD test, on the other hand, he scored off the charts. Everything from his lightning fast mind to his constant movement (not stimming, just MOVING) to his general breakdowns if he gets a question wrong was right on there. But professionals who see him in brief settings keep saying “no, he doesn’t have ADHD, but he’s probably autistic.”

I don’t know how to respond to that! I go, I do the assessments that are available, and maybe I have confirmation bias or maybe I’m too close to the situation or maybe I’m just crazy, but I end up getting super low scores for autism and super high scores for ADHD and I just ???? am I missing something? I see this child all day every day. He’s my son. We talk all the time. We snuggle up at bedtime and go over his day. He tells me matter-of-factly how he feels about so many things. I know when I can and can’t push him on things, when we can work through something or when we need to disengage from it. I’ve SEEN him from the moment he was born, and I’m just so confused here. Are they seeing something I’m not? Are we all just misinterpreting the same information?

Anyway. We’re trying to get in touch with someone to schedule an evaluation for the next soon, because if he does have autism or ADHD (or sensory processing disorder, which I also suspect), I want to know ahead of time so that I can plan IEP meetings for when he gets back to school in the fall. If nothing else, I want to be able to talk to the school in general to say that while he’s soaring in math and science, and while he can read perfectly well, he struggles with handwriting, with creating sentences, and with reading comprehension. 

SO.

Life goes on.

It goes on for me, too. I started my inauguration day with a visit to an orthopedic specialist to talk about my back. Here it is:

Note how spines are not supposed to look like that. I apparently have slight scoliosis (less than a 25 degree curve, which means I’m not really a candidate for surgery, more for just PT and figuring out how to live life overall with a wonky spine), some twisting going on (though it’s unclear if that was just posture-related or is an actual Problem), and bone degeneration that’s a bit more than usually expected at my age (not quite 40). I’m supposed to be getting on a calendar for an MRI sometime in the next near future so that we can see what nerve involvement is there, and if there is nerve involvement (which there is, I can feel it), I’m a candidate to get an injection of anesthetic and steroids into my sciatic nerve in order to keep it from, you know, murdering me. 

It’s both vindicating and frustrating. On the one hand, I’m able to point to it and say, “LOOK, see, the fact that I’ve thrown my back out at least once a year since I was 20 has a REASON behind it. I’m not being overdramatic, I do have some issues that could stand to be addressed in numerous ways!”

But on the other hand, I feel frustrated that I’m just learning about this now, that I didn’t think to get it examined before, when I was throwing my back out with such regularity, not necessarily because I was lifting something wrong or doing something weird but because my back is just prone to spasms. I could’ve spent years working on this and not been here, feeling miserable and useless.

Oh well. The best time to plant a tree is 20 years ago. The second best time is today.

And life goes on. The pandemic is slowing, slowing, slowing. It doesn’t feel like a very fast slowing (because how would slowing be fast??), but it’s happening. If President Biden is able to really get his vaccination plan off the ground, maybe summer will be normalish, maybe we’ll go on a very short vacation to like Hershey Park and Sesame Place, maybe this isn’t a forever sort of thing. Maybe we’ll get on a plane again someday, maybe we’ll travel across the country and the world again. It feels possible, which is a huge step above where it felt even a month ago, and I’m grateful for that.

Until then, though, life goes on.

Unmasked

I was born in 1983 and grew up in an age when girls weren’t really diagnosed with autism unless the symptoms they presented severely interfered with their daily life. A girl like me, quiet and awkward, a little weird, a little too obsessed with the Thing Du Jour (American Girl dolls, Mandie books, My Little Pony, Barbies, spooky stuff, etc.), mostly gets good grades but really struggles with homework in subjects she doesn’t like… I flew under the radar. I didn’t stim or do anything that would make me seem weird. I didn’t freak out when the sounds in the cafetorium/cafeteria were too much for me to handle, I just got really quiet and didn’t participate in the lunchtime conversation. I excelled in certain subjects and flailed in others. I was flawless when it came to standardized testing, but then got an 8/100 on a math test the same week I soared into the 93rd percentile for the NMSQT. 

I could talk, and I took care of myself physically, enough that I didn’t usually warrant a second glance. Oh, I got bullied and made fun of in junior high–brutally at some points–but I flew under everyone’s radar for the most part. I don’t think anyone ever clocked me as weird enough to maybe be autistic, because back then, in the 1990s and early 2000s, autism wasn’t as well understood as it is today, so my cocktail of manifestations didn’t alarm anyone.

That and I masked

Masking is pretty common in our world. We all wear masks sometimes to hide certain aspects of our personalities depending on the situation; for example, if you’re at an important job interview, you’re not exactly going to be showing off the part of your personality that likes to do keg stands or the part of your personality that likes to lounge around in the nude on weekends. There’s nothing wrong with either those traits or the masking of those traits. It’s just something that you do to survive socially, because your new boss does not need to know that you like a gentle breeze ‘round your privates on Sunday afternoons.

Where autism is concerned, masking is a lot more… consuming, let’s say. Autism isn’t a personality trait that shows up in certain situations (like even if I do like to run around naked on weekends, I don’t do that in the office); it’s the way your brain is wired. Not wrong, just different. The trouble is that different can be socially damning. 

I remember when I was younger, there was a kid on my school bus whose autism manifested much more noticeably than mine. While I would sit quietly and stare out the window, focusing on the cool sensation of the glass against my forehead, he would talk and flail and laugh, and the kids from the back of the bus bullied him mercilessly, sometimes going so far as to sexually harass him. He stood out too much; it was social suicide. 

And, well, I learned from that and from other small situations as I grew up that letting those weird parts of you show is too dangerous. That it’ll get you made fun of and torn to shreds. That you’ll be alone. I saw the girl who came from a lower income family, whose clothes and hair were always dirty, who always sat alone. She was too different; she was alone. I saw the kids who I now regret not befriending, who went on and on for days about D&D and all of those fantasy stories, and I saw how people avoided and laughed at them, and I learned a lesson. They were too different; they were mocked. 

You hide things, you know? Don’t talk obsessively about Disney World, that’s weird. Are you excited about that thing? Don’t flap your hands or bounce or do a little dance; that’s weird. Are you too tired to think? Don’t play with your hair; that’s unhygienic (Mrs. Dube, if you ever read this, I hope you feel like shit for what you did to all of us in your class). Everyone is having fun at this party, and even though it’s too much for you, smile anyway. People think it’s weird when you talk to them without meeting their eyes; make eye contact, even though it hurts. 

In a way, I sometimes felt like an alien, trying to learn the way that the world was supposed to work. It’s part of why I loved being onstage–it was like an evaluation of my ability to act like a human being. “SEE?” I could say, as I got into one of my character parts (I had so much fun with those). “LOOK AT HOW GOOD AT HUMANING I AM!” And I wasn’t weird or different, I’d unlocked the secret to being human like everyone else. 

And then the lights went out, I got offstage, and I was right back to being bad at being a person again.

(this all sounds very sad, but I promise, there’s good coming)

But one thing nobody talks about, when they talk about masking and autism and all of that, is the beautiful freedom of unmasking: of finding someone or several someones who catch a glimpse beneath your mask, show how much they love you anyway or even because of what they see, and help you feel comfortable enough to remove your mask completely, to say, “fuck it, I am who I am.”

My most obvious example of this is Kyle. Over the early years of our relationship, he peeled back layers of my mask bit by bit, knowing what was underneath but letting me take my time to show him. And now, my god, how comfortable I am around him! We were watching The Mandalorian a little while ago, the episode where Moff Gideon reveals that he has the darksaber, and I shrieked and started flapping my hands, which I never do because I know it’s a weird thing, that even if I have the instinct to do it, people don’t like it when you do it, but with Kyle, it just hit me that maybe it’s okay, that maybe he loves that about me, and he does, and he smiled at me and just said that he knew I’d love that, and that was that.

GOSH I love him. 

And I’ve been thinking about it, and I realized that my first intentional unmasking came when I did my semester at Oxford back in 2004. Away from people who knew the masked me, away from anyone who knew the big long plans I had for my life and the narrative strand I wanted my life to take, I felt free to just… be. Not to the extent of flapping my hands excitedly about things, but I went in exhausted, torn down from a shitty relationship right before I left, and basically stripped down to my essentials to a point where I just… couldn’t be bothered. After all, it was only 100 days, and if my housemates thought I was too weird, we’d all be going to different corners of the world after that anyway.

But they didn’t think I was too weird. Pretty weird, I’m sure (I am pretty weird, after all), but they liked me, the me with only the barest of masks on, and the best part about that was how it allowed me to solidify who I am, not just which mask I’m wearing. And since that point, I’ve been a lot less interested in hiding any part of me: autistic, neurotypical, pleasant, unpleasant. I am who I am, warts and all. 

I also look back and think about the handful of “ones that got away,” you know, the people with whom you know you could have had something special, that even when you’re perfectly happy in the life you’ve got now, you regret the way things ended. And I realized that the ones that got away, the ones I wish I had actually connected with for longer than a millisecond, they all peeked beneath that mask and tried to let me be myself… and I got scared and ran, because even with that reassurance that hey, I love you for who you actually are, it’s hard to trust. 

Because you know, you get people who want to remake the mask into something more to their liking or you get people who trust the mask is reality, but when someone genuinely wants to see what’s beneath the mask before you’re ready, even if they like what they see, you get scared. 

Anyway.

Isaac, so far, has no mask. He looks to his brother and sister for information on how he should behave as a person–it’s fascinating to watch in real time–but he doesn’t pretend to be anything other than who he is. And he is an absolute delight of a child. He’s creative and funny and an absolute little shit in the best way possible. 

(parents know that when you’re calling your kid a little shit, it’s not because you don’t love them; it’s because they figured out how to do something they weren’t supposed to do in a way that you can’t help feeling a little bit proud of. Like, no, you’re not supposed to have eaten 32 cookies before dinner, but the Rube Goldberg device you built to access the Oreos is technically amazing and I’m sending in your application for Mensa while also sending you to your room)

We call him our little rogue, because we are a D&D family, after all. Sam, with his strong sense of personal rules and tendency to charge headfirst into everything (walls included) is our paladin. Carrie, always performing and able to reduce you to giggles or tears with a single look, is our bard. But Isaac, climbing and sneaking and figuring out every possible puzzle, is our little rogue. 

He likes to build and set things up in particular ways. He uses the books in his bedroom to make smaller rooms–setting them up at the foot of the bed or against the wall to make into a room with a door that opens and closes. And sure, he tears the pages out and tosses them around like confetti (we are down to about 3 books that he hasn’t destroyed, save for the older ones that come into the room for bedtime and leave afterwards), but the amazing creativity and cleverness he exhibits to build his own little rooms like that just astounds me. 

And then his cars. He’s doing the stereotypical lining up cars thing, but he does it in such a way that the cars all face out of the window through which he watches cars coming up and down our street. And I just flail because what a guy! What a clever little dude! What an amazing mind at work! 

We never discourage him from stimming; instead, we stim with him, the whole family gets involved. We turn on his favorite music, and the five of us just rock with him, and he has this HUGE smile on his face because he’s not alone. His family gets him. We’re not going to stop him from being who he is. 

I think the fact of him eventually masking is inevitable; even in a more enlightened world, 30 years after I was a weird kid combing her hair with a fork in the first grade, you can only deviate from the norm so much before people start giving you a wide berth. He’ll have a teacher scold him at some point for rocking too much during a test or he’ll get teased for talking too much about cars with another person. He’ll learn to hide those aspects of himself for a while, around people who don’t know him well enough to love him for who he is. And I hate it.

But.

I hope that Isaac understands this: that he doesn’t need to mask around us. That we’ve seen the way he’s made from the very beginning. We know why he does what he does, and we love it about him. Isaac, unmasked, is the person we love and always will. 

Progress

Weekday mornings at 9:00, Isaac’s ABA therapist arrives.

(we’ll call her Y here)

Isaac knows when it’s about time for her to get here, and he perches himself on the back of the big couch, the one against the picture window. When he sees Y’s car pull into the driveway, he smiles his happiest smile and watches her walk from her car to our front door, and he beams at her as she comes inside. 

She washes her hands first thing (after all, we’re still in a pandemic), and then she goes into the toys room (it’s supposed to be a dining room, but Sam’s toys have kind of taken over, and we don’t really have the best dining furniture anyway) to get the Box. The Box is essentially a lockbox full of developmentally appropriate toys: crayons, blocks, beads, puzzles, Play-Doh, etc. The Box only comes out during ABA time and gets put away when ABA time is over, so the toys mean a lot to Isaac (and to Carrie, who gets ABA therapy at the same time Isaac does). 

ABA is a lot less structured and behaviorally focused than I’d expected it to be. Isaac mostly directs what they do himself, with the only real therapeutic mandate being that he has to communicate as much as possible during play. This typically takes the form of him asking for things by saying their name and saying, “please” (e.g., “please puzzle” for today) or making a verbal choice between two things (e.g., choosing between the yellow crayon and the purple crayon… admittedly, a very difficult choice). 

For two hours, from 9:00 to 11:00, things are pretty blissful. Isaac loves Y to pieces (and she’s fantastic with him), and he loves his Box. I can’t tell you if he’s got one favorite toy in there that matters more than the rest, because he bounces between them so happily, though he makes sure that he spends a healthy amount of time with each one. He likes stacking shapes and building with blocks. He likes using crayons–both fat and thin–to make various masterpieces in a coloring book. He likes putting together the puzzles and naming each picture. He likes smushing the Play-Doh between his fingers. He likes pushing the wheeled toys–a fire engine and a singing puppy–around the living room. 

When it’s time to clean up and have lunch, he helps, because he’s a firm believer in everything having a place, and the toys’ place is in the Box. Y takes the box back to the toys room and says good-bye (Isaac always says, “Bye!” very happily, I think mostly because he knows how to say it), and then it’s time for lunch. 

*

ABA is one of those things that I find difficult to talk about with people I knew well before Isaac got his diagnosis, because in a lot of adult autistic circles, ABA is tantamount to child abuse. It’s painted as a way to erase your child’s autism, as a lot of negative reinforcement, as trying to make your kid “normal” rather than as accepting them for who they are.

And the reason I’ve found it difficult to talk about ABA is because… well, our ABA isn’t like that at all. Not even a little bit. 

I’m not saying that to invalidate anyone’s experiences, because I believe them, and I can see where ABA therapy has the space and methodology to become really nasty, really easily. And I’m also really frustrated that it’s often the only therapy approved by insurances.

I remember when Isaac first got his diagnosis, the doctor who gave him the diagnosis said that maybe he wouldn’t even need a diagnosis in a few months (of course, this was before COVID turned everything into crazy town, so who knows what she’d say today?). The way she said it sort of suggested that ABA and therapy would remove Isaac’s autism, but they haven’t done that, and that pleases me. He’s autistic. That’s as much a part of who he is as his brown eyes, his adorable giggle, his amazing hugs (seriously, this little guy gives the best hugs). 

What ABA has done for him is given him a way to communicate with the rest of the world and a way to not feel so frustrated. He’s always been a kid who desperately wants to be understood, so when he started having those lightbulb moments with ABA where he realized “oh, if I make this noise while moving my lips like this, they understand that I want milk” they came with so much joy for him. He still gets this enormous smile on his face when he says something and you understand him. He wants to be heard. 

That he’s being heard and understood has also really improved every aspect of his life. He’s not as prone to meltdowns or tantrums as he used to be, and he’s sleeping better. He’s stopped throwing the entire contents of his and Carrie’s room to the bottom of the stairs most days (most days). Even better, for my mommy heart, he and Carrie have suddenly become inseparable. Oh, they still fight like cats and dogs sometimes, but they also refuse to sleep in separate beds at night (though if they wake up at 3 a.m. and aren’t in separate beds, it gets very loud) and they tag team almost everything. Isaac is mindful of the things that Carrie likes and makes sure she has those things whenever possible (e.g., her favorite toy in the ABA Box is the bucket full of Mardi Gras beads; she likes to drape them around her neck and around her ankles to be as glamorous as possible. Isaac knows this, and so once he’s worn all the beads for a beat, he finds her wherever she is and methodically adorns her). When he is upset, Carrie is often the first to notice and make sure that everyone else knows (“ISAAC SAD! STOP IT!”). 

I don’t know how things are going to progress in the next ~year (the twins will be aging out of early intervention next spring, theoretically, depending on what COVID is doing), but so far, ABA has been nothing but wonderful for us. And I think that boils down to two (or so) things. 

The first is Isaac’s personality. He’s an extroverted autistic kid; he wants to communicate. He’s a goofball, very talkative and curious, excited about being tall someday, loves singing, and loves people in general. And I think that’s kind of what autistic therapies–especially ABA–want kids to become: those outgoing, will tell you all about This Neat Rock They Found, absolutely hilarious kids. I’m fortunate enough that I have three (hahahaaaaaa my introverted ass is like “I love you all so much but I need sixteen naps right now thx”), that Isaac was essentially just waiting to have the tools to communicate, so when he was given those tools, he flourished. 

And like… I think a lot of people don’t understand that autism is a way of experiencing the world, not a personality trait. You can’t train it away by trying to reward outgoing behavior or punish introverted behavior (nor should you because hello, let your kids have personalities?). And that lack of understanding permeates a lot of autism therapies, unfortunately, so instead of focusing on giving kids the tools they need to express their wants and needs (because I don’t think anyone would say that giving kids those tools is a bad idea–you need to be able to express that your needs aren’t being met, and what sort of shitty life is it if you can’t ever say, “I want a doughnut”?), they focus on trying to change personalities. And that just isn’t going to work. 

If that makes sense, which I have no idea if it does. 

Anyway, the point I’m trying to drive at is that Isaac’s personality already lends itself to being outgoing, friendly, and excited about interacting with the world. And I think that this sort of therapy wouldn’t be great for a kid who’s the opposite, who’d prefer to sit down and read a book or draw a picture instead of telling you about Also I Found A Stick Shaped Like A Y.

And the second, which remains the reason I sort of stay aloof from a lot of Autism MomsTM, is parental wants and expectations. I have a really good friend whose son has autism and is about two years older than the twins, and she’s been kind of a mentor/guide for me whenever I’m like “AAAAH WHAT DO I DO ABOUT THIS???” One of the things she told me that helped me the most was that ultimately, therapists work for you, and I think that’s been enormously helpful in making ABA a positive experience for us. 

At the beginning of Isaac’s therapy, we talked about what our goals were for him, and Kyle and I expressed that we just wanted him to have a way of communicating with us. We didn’t–and still don’t–want to take away his stimming or force him to communicate in a way that doesn’t work for him (e.g., if he’d really struggled with talking, we’d have been perfectly happy to work with PECS or to learn sign language or whatever he needed). Our therapists have been really respectful of that; Y, in particular, hsa been fantastic about incorporating Isaac’s stimming into his therapy (like how she taught him to say, “ready, set, go!” by preceding a moment of spinning with those words, and now they’re his favorites). 

There’s a lot to unwrap about therapeutic goals coming from parents, because I’ve no doubt that there are plenty of less than reputable agencies eager to make a quick buck or adhere to some weird guidelines who will pressure parents into setting goals that aren’t fair for their kids. Kyle and I tend to be immovable rocks when it comes to our kids’ best interests (e.g., if you can’t present a very strong, very scientifically backed, peer reviewed reason for changing our minds, we’ll be showing you the door), but when you’re overwhelmed by a diagnosis or don’t understand what autism is, it can be easy to find yourself steamrolled. 

And at the same time, there’s a lot of pressure in our society towards conformity; not necessarily towards sameness, but rather towards not getting too far outside of the mold. Even without external pressure, I feel like parents can have an internal need to “normalize” their kid as much as possible, and again, that can lead to some… mmm, wonky therapeutic goals. 

So I guess my overall takeaway with ABA so far is that (a) it’s not for everyone, and less cookie cutter therapeutic approaches should be researched and covered by insurances; and (b) parents of autistic kids need to be educated and empowered to set therapeutic goals that don’t erase their kids’ neurodivergence but instead give their kids the tools they need to lead healthy and fulfilling lives. 

*

Tangentially related, the twins have been on a Sesame Street kick lately (just the old stuff, though; I don’t know who’s who on the new episodes, and I don’t have the mental real estate to learn just yet) and have continued to prove my hypothesis that old school Sesame Street creates early readers. Between that and the Number Blocks on Netflix (highly recommend both, btw), both twins can count to at least thirteen (and, if you accept them repeating thirteen several times before shouting “TWENTY!” they can also count to twenty) and have started learning their ABCs. Carrie is particularly blowing my mind by (a) singing the whole alphabet song by heart, (b) learning the signs for all of the letters, and (c) recognizing letters and numbers by sight. 

Which isn’t half bad for a pair of 34 week technically developmentally delayed preemies 🙂 

Week One of ABA

As it turns out, ABA is considered an essential service by our state, so whether it’s wise or not (I’m leaning towards “eh?” because it’s a single person and we make her wash her hands before she interacts with anyone), we’ve started Isaac’s ABA. This is also, at least in part, because nobody knows when things are going to get back to anything resembling “normal,” and I don’t want him to miss out on any therapy he needs or be super duper behind in the coming years. Autism therapy services are notoriously hard to schedule and nail down (like forget finding someone who’d do Floortime or RDI, they’re basically booked years in advance, and I guarantee they are not covered by our insurance), so it feels like waiting at all is walking a very fine line between logical and bad idea land.

I’ve written before, too, how the idea of ABA made me nervous, and it still does because we’re not technically in the therapeutic part of it yet. The first week, as our BCBA (who is basically the services coordinator) explained to us, is all about getting Isaac used to his therapist (currently Yesica, later Kathleen) and attached enough to her that he’ll actually be interested in the therapy and not spend the entire time burying his head on my lap like he did on Thursday. Things will 100% change when we get to the actual therapy part of therapy, but for now, I’m feeling encouraged.

On day one, Yesica and our BCBA Jessica (it was confusing) brought in a big locked trunk of brand new toys that they’d scrambled to get (because literally nothing is open right now, and the places that are open are mostly just stocking essentials). The toys included a lot of typical toddler toys like stacking cups and boxes with shaped holes and crayons and a noisy firetruck. The idea with these toys is that they live at our house and only come out when Isaac’s therapist is here; that keeps them fresh and interesting and special, so that Isaac isn’t just using them all the time and not associating them with therapy.

Our therapist is here from 9 a.m. until 11 a.m., five days a week, which may be a little much for Isaac (though the doctor who diagnosed him suggested at least 10-15 hours, probably more), as he basically hits his limit around 10:30 and spends the rest of the session on my lap, staring off into space. Which, yeah, fair. I’ll admit that if I had someone pulling me into interactive play all the stinkin time, 90 minutes would be about my limit as well, and I’d probably be like “OH I NEED TO GO PEE, BE RIGHT BACK” and then hide in the bathroom on my phone until two minutes before they were scheduled to leave, at which point I’d wash my hands, come out, and be like “OH MAN SORRY ABOUT THAT, YOU KNOW HOW IT IS.”

(this would only work once, but I’d do it anyway)

And basically, for the last week, it’s just been playtime for those two hours. Yesica encourages Isaac to play with different toys and tries to get him to talk while they’re playing. She’ll help him to sign for “open” or encourage him to say “help,” and whether it’s because he’s just reached an age where that works for him or whether it’s because of the therapy, it’s working. He does regularly sign for “open” and he does regularly say “help,” and it’s really nice to see. He’s also been trying out more and more words lately, which we celebrate loudly every time there’s a new word in his vocabulary. Cake, tada, buzz, wow, light, things like that. I feel like a switch got flipped in his mind, where he’s like “oh, I can make words too! Cool!”

The best part of ABA so far, though, and the part that’s given me the most peace about the process is how Isaac’s therapist has incorporated his stimming into his therapy. Instead of trying to discourage it or stop it from happening, she’s been encouraging it and using it to teach him things. She’ll pick him up and say, “ready, set, go!” and then help him spin around, and it’s worked to teach him to respond to “ready…” by saying “set, go!” Earlier today, he was sitting on our rocking ottoman and rocking himself, as he does, so she worked with it. She rocked the ottoman for him, and then stopped, while teaching him the words “stop” and “go.” 

This mostly gives me peace because I didn’t want any part of this to mask or erase Isaac’s autism. It’s who he is. He will never not be autistic, and that’s wonderful. I don’t want to ever teach him that’s something he needs to hide or pretend he isn’t. He is who he is. And so far, even though it’s only been a week, they seem to be embracing that. I’ve got fingers and toes crossed that they’ll keep it up as we progress through therapy, into the coming year and into his eventual transition to preschool next spring (please, please, pleeeeeeease let this pandemic have calmed down some by then). 

I’ll keep talking about this, because when we started to go into ABA, I felt like there weren’t any “middle of the road” perspectives out there, where the parent talking about ABA wasn’t wanting their child’s autism to be cured but also was seeing the necessity of some therapy to help their kid cope with a very noisy world that needs words. And so far, that seems to be the mindset of our therapists as well. 

Two of them

It’s coming, sooner than I want it to, mostly because I feel wholly unprepared.

It, of course, is my life as a stay-at-home mom of two two-year-olds. March 14, the twins turn two, and even though it won’t technically be all that much different from the day before, things are already starting to take a turn for the chaotic.

The biggest preview of things to come happened about two weeks ago. As part of Isaac’s therapy, we’re taking him (or trying to take him) to a parent-and-child group through our local Early Intervention center. I’d tried it before, when the twins were really young, but it hadn’t worked out because being a singular mom hauling around two babies with the exact same needs is… well, it’s rough. 

The twins were, I believe, barely past 5-6 months old at the time, not quite sitting up independently yet, and certainly not in a place yet where I could really settle them down and let them frolic. I mostly just sat on the floor, cross-legged, with the two of them lying in front of me, immobile and baffled by the suddenly crazy world around them. The other parents were chatting back and forth about how their kids were doing–this one had a GI appointment later this week, that one was finally taking a bottle without any struggle–but I could barely pay attention for more than a few seconds because the twins just. Didn’t want to be left alone on the floor. 

I couldn’t do it alone, I realized. Whether it was because of my own sensory issues making classroom settings stressful for me (too. much. talking.) or because having two infants and one parent makes doing things impossible, I couldn’t do it alone. And anyway, we didn’t really need group back then. It was mostly a playgroup for parents to come and talk about their struggles and get support, and while I’ll be the last one to suggest I don’t need support, I prefer the one-on-one kind or else support in chat windows. Face-to-face support is… stressful. 

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But then Isaac got his diagnosis, and one of the recommendations from his doctors was some sort of playgroup. Right now, he’s just old enough for the parent-and-child group, like before, and because Carrie is also in Early Intervention (at least until she stops being a little turd during evaluations and shows people what she can really do), she gets to come along, too. It’s a two hour session, once a week, and because Kyle works, I’ve asked my mom to join me on group days (which is great because half of the other adults there are grandmas as well) because otherwise, I wouldn’t be able to do it. And she’s graciously agreed to join me, and it’s all fun, we expected.

Except. The first day of group, she got a stomach bug, and she got it right as I pulled up to the center.

So I tried it alone again.

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What you first must understand about having twin two-year-olds is that unless a place is easily accessible by stroller, you’re going to have a helluva time getting in. I was recovering from bronchitis at the time (more on that in a second), and I had to haul these two children, neither of whom wanted to be carried, down a couple of flights of stairs to the classroom. I don’t blame the EI center for this, since they technically do have access around the back of the building, and they have an elevator as well (“elevator” in this instance meaning “manager’s lift from back when it was an industrial building”). I mostly blame my thought process of “well, we’ll just go in the front door because that’s less of a hike than walking around back.”

So twin two-year-olds down two flights of stairs, both of them wanting to get down but also not wanting to let go of me, and there’s no space on the stairs for any of us whatsoever. We finally got down to the classroom in time for the end of free play, and the twins had their first encounter with washing their hands in a weird place. By this age, Sam had been in daycare for about a year, so he was an old pro at washing his hands in strange places, but the twins have mostly just seen the inside of our downstairs bathroom and me coming after them with wipes. Carrie wanted nothing to do with the process and screamed and cried and refused to get her hands wet. Isaac, on the other hand, kept climbing up the step stool to play with the faucet again and again and again. 

Now here, one might ask, “well, why didn’t you pull him away?” or “why didn’t the teacher pull him away?” and I might say, “because my hands were full with Carrie, who was melting down utterly; and because the teacher had half a dozen other children plus the classroom schedule to take care of, as this is a group that has a more one-on-one dynamic.” 

Yes, Carrie was melting down, though Isaac recovered quickly from being prevented from making his dreams of flooding the room come true. He spotted a peg board like one we have at home and set to work making the tallest possible tower of pegs. Carrie, once she’d adopted a pouting acceptance of her fate, dutifully marched around the room to see what toys she could see, often coming over to sit on my lap and cry against my shoulder some more at the misery of it all. 

They both finally shuffled over to the play kitchen, which pleased me–they love watching me cook, they love watching cooking videos, and now they were getting a chance to try it out for themselves. Isaac hummed and babbled to himself as he tossed plastic ingredients into a pot (carrot, fried egg, doughnut?), and Carrie became… oddly enamored of a plastic spatula and a plastic watermelon slice. For a few minutes, they were very happy. 

I, too, was happy–happy enough to play with the Little People someone had scattered on the floor by my feet. I set up a summoning circle, and the Little People called forth the Little People Pope in his Little People Popemobile, and it was great.

And then, it was time to stop free play. 

The other kids were, I think, seasoned pros about this, or at least more of seasoned pros than either Isaac or Carrie, whose days at home have all the structure absurdist literature, which is to say little to none. Their switches between activities at home are fluid, and I don’t make them put away their toys before settling them in their high chairs or bringing them up to bed because I am tired and I don’t want screaming. At group, however, once free play is over, the free play toys need to be put away. Isaac was fine with this (hilariously, my autistic kid had the least issue with change) because he loves cleaning up, and seeing that these New Toys also had a Place basically made his life. 

But Carrie.

Dear, sweet Carrie. Carrie, who has developed an almost obsession with me lately, where even if I just step outside the room to go to the toilet, it sends her into a meltdown. Carrie did not want to give up her spatula and watermelon. 

I’m pretty sure I did it wrong. I asked nicely for the toys and, when she wouldn’t give them up, pried them from her vice like grip, which resulted in another tantrum. And I say tantrum, rather than meltdown, because there is a difference between the two. She wasn’t overtired or overstimulated, she just wanted to hold onto those two toys in particular and having to give them up made her Very Angry. It didn’t matter that it was circle time, and circle time meant songs. It only mattered that fuck you people, I want my spatula and my watermelon. 

And all the while, Isaac was running around the rest of the room. He discovered the trash can, which the teacher promised would be put away the next time we came (but for that time, it was not put away, and Isaac liked how the lid flipped around). 

I tried, I tried so hard to wrangle them both to the circle, but I could only hold onto one at a time. When they’re calm, I can do both. They rest their heads on my shoulders and conform to my body, and we’re happy. But Carrie was angry, and Isaac was excited, and their existence was chaos given form. Letting go of one to catch the other made it worse. Other children in the circle were less than happy to be there, but those other children had a parent apiece to keep them from running amok. Isaac and Carrie just had me. 

(sidenote here: I’m not mad at my mom for not being there; she got sick, and that happens. I’m just recounting how crazy it was and how it’s helped me realize that oh man, am I in over my head)

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Circle time was all about songs, with the kids who’d been there before maturely choosing a song they liked and adorably doing the hand motions. My kids, who had not been there before, either ran around the room like a crazy person (Isaac) or screamed and cried like I was tearing out their toenails one at a time (Carrie). Carrie did pay enough attention, however, to fall in love with the “fishy” song and how it ended with “bubbles… bubbles… bubbles… SPLASH!” I think it may have been the only thing she truly enjoyed about the experience.

After circle time, it was time for snacks, which prompted another ruckus from Carrie because hand washing. Isaac washed his hands once, went to the back of the line and washed his hands again, went to the back of the line and washed his hands again… while Carrie had to be forced to touch the water (she’s not like that at home at all… she’s kind of my little fish) and continued to sob hysterically when she couldn’t grab a bowl of peaches all by herself. 

It felt like I was upending this poor teacher’s entire day by having these two unruly kids. Everyone has a first day in group, I know, and all kids have bad days, but they were out of my control entirely. If I had one calmed down or under control, the other was off in the corner summoning Baphomet from the ninth circle of hell or something. 

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But at least the snack was okay. The other parents sat nicely with their kids who’d been there before, all of them using utensils in some approximation of correctness. My twins have little experience with utensils, since finger foods are just easier when you’ve got two, but Carrie gave it the old college try and ate her peaches in about three seconds flat. Isaac had no interest in peaches and instead dumped the bowl over with glee. They both selected pretzels and goldfish as part of their snack, and they would have done well, except they were next given open cups of water to practice with. 

Like. Okay. I know that I need to get them started on that. I know it’s something I should’ve been doing for a while. They’re almost two. Bottles should be ancient history.

But I remain tired and maybe I don’t want to deal with wet milky clothes every day all the time. 

Carrie gave it a try again, and she got thoroughly soaked, though she got some water in her mouth. Isaac grabbed the cup by the lip, and while I know I should have repositioned his hand and let him try again, all I could think of was how I was about to have two drowned rat children and it was 19 degrees outside.

So I took the cup away.

Undeterred, Isaac took Carrie’s cup and sat there merrily squishing every goldfish and pretzel he could find into it until the teacher finally came and took snacktime away, replacing it with craft time: black construction paper and chalk. 

Isaac ate the chalk, but it’s nontoxic, so whatever.

Carrie actually did a very good job, scribbling and stabbing and giggling all the while, which is probably why her next despair-a-thon started when it was time to give the chalk back in exchange for bubbles. 

I like bubbles time. Everyone likes bubbles time. All of the children calmed down and started laughing and chasing the bubbles. Blowing bubbles is a soothing breathing technique, and I felt some of my stress dissipate. Carrie even managed to blow a bubble of her own and squealed with pure joy when I caught it on the wand for her. 

And then it was time to move on. Free play, circle time, snack, craft, bubbles, and now gross motor play in the gym area two rooms down. The twins aren’t very good at being escorted places while holding hands because… well, a lot of reasons. With Sam, we had one child, so we took him out everywhere by himself, and we could hold his hands, and he got good at it. I took him out alone a lot. When Kat lived with us, she came with me. Taking Sam out was easy at most ages, and it still is; he’s a delight to have at any store, behaving himself quite well in exchange for a trip down the Lego aisle.

But the twins… I’ve been afraid. For good reason. I have two hands, exactly two, and any outing with two children requires more than two hands. You need at least one hand, probably two, for each child. You need hands for the stroller and hands for the diaper bag and hands for the inevitable “NO DON’T TOUCH THAT… oh, sorry, I’ll pay for it, sorry!” Being that I only have two hands, I don’t take the twins out by myself very much yet. I need to, I need to start doing it because how else will they learn? But…

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But. That’s basically the moral of this whole story. Everything is twice as hard with twins, which is why I haven’t been doing any of it, which is why they came to the parent-child group as a hot mess.

Somehow, I wrangled them down the hall and let them free. It was… something. Isaac is bad at following commands and ignored everyone who told him that slides are for sliding, not climbing, but later found a rocking horse and pure joy. Carrie just… up and slapped everyone she met. Hauled off and just, SMACK! Right in the face. I thought I saw it once or twice, turning around from helping Isaac to stop climbing up the slide, buddy, what did I say? but I only really caught it once, as I was bringing Isaac back from something else. I turned around, Carrie was facing this other little boy, and she just smacked him right across the mouth, twice, before heading off to do her own thing. 

“Carrie!” I admonished her, hurrying to find some way to scold her without dropping Isaac. The little boy seemed mostly unfazed, though he did lean against his mother sadly, and I was so embarrassed that I couldn’t bring myself to fess up and apologize. 

And then the twins got stamps on their hands and the group was over. I wrangled them back up the stairs, and right when I thought we were going to be okay, Carrie broke away from me, running past the receptionist’s desk and into a meeting room filled with heavy and dangerous office supplies. I had Isaac on one hip, the diaper bag on the other, my purse slung around my neck, and zero energy. “Carrie!” I cried again, and the receptionist looked concerned while doing nothing. 

I put Isaac down. He dissolved into sobs because I was clearly leaving him to be eaten by wolves. I put the diaper bag down. I put my purse down. I marched into the office after my little escape artist, who giggled merrily until I picked her up and then began screaming. I scooped up the diaper bag. I scooped up the purse. I scooped up the sobbing Isaac. I got us all out to the van, somehow, and got everyone buckled in, somehow, and I sat in my front seat and sobbed. 

It was just so much.

Group is a challenge for me from the start, because group means interacting with strangers, which is not something I do well. It means an unfamiliar environment. It means too much noise. It means new situations and strange schedules, and it means that I’m already parenting on hard mode just by being there. 

But add twins. 

Two little adorable kids, one of whom can’t talk at all yet, the other of whom is an impish diva gremlin child. They’re freaked out because it’s a weird place. They’re freaked out because it’s a weird schedule. They’re freaked out because there’s so much noise and so many people and everything happens so much. 

And congratulations to me, I think I just did parenting on hard mode tournament level. 

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I congratulate myself mostly because they came out in one piece, nobody got seriously hurt, and against every sense of self-preservation I have, we’re going back on Thursday (after missing last week because Isaac had a merciful 100 degree temperature, the exact cut off for “you can’t come to group today”). But man oh man do I feel like I’m shitting the bed on this parenting thing. I need to push them and teach them new things, but group made me realize just how behind I’ve been and just how ill-equipped we are for that sort of thing. Worse, it made me feel utterly incapable of doing… well, anything that involves them. How am I supposed to manage twin two-year-olds on a day-to-day basis if I can’t even keep them from wreaking total havoc in a group environment?

I remind myself that my mom will be there this time (hopefully), and that once Isaac’s ABA therapy starts, his therapist will be there. That it’s neither a race nor a competition. That they’re happy, healthy, and perfectly fine children, technically around where they’re supposed to be. 

But I also can’t help but look at it as a test where I didn’t exactly fail, but I won’t be getting a lot of praise, either. 

It also caused my bronchitis to relapse, and now I’ve got a nebulizer, so that’s fun.

I don’t know. I shouldn’t be in my feelings about this, I shouldn’t still be kicking myself about the whole situation, but I am. I feel like I’m failing them on some level that they’re nearly two and don’t have these basic things going on–the ability to transition from one activity to another without falling apart, the ability to drink out of a cup without a lid, the ability to not slap the living daylights out of other children who happen to exist. They’ve not had a lot of opportunities to practice those things, and I know that’s largely my fault, and it’s something I need to work on going forward, but I feel shitty that I haven’t… I don’t know, I guess been doing more to this point.

I don’t know. I don’t know. Two year old twins are a lot.

Isaac

When I was pregnant with the twins, I had this nagging fear about Isaac, that I’d have a hard time bonding with him. I was excited to welcome Carrie into the world, not just because she was my child but because she was the girl I’d dreamed of having for a very long time. And it’s not to say that I wasn’t excited about Isaac–he was a surprise blessing, the second baby on the ultrasound where we expected to see nothing–but most of my excitement about him came about in an “and” sense. 

It terrified me. I didn’t want any of my children to feel like an “and” and I still don’t. I didn’t want Isaac to be that middle child that faded into the background beside his big brother and little sister. I wanted him to know that he was powerfully, wildly loved, even if I couldn’t conjure up the emotions supporting that fact when I was the size of a small whale. And I was terrified, utterly terrified, that I’d never bond with him the way I bonded with Sam, the way I expected to bond with Carrie. I wasn’t jumping out of my skin with excitement about having another boy, and I was afraid that would translate to my bond with Isaac taking more time to arrive.

Spoiler alert: SUPER didn’t happen. The instant they brought him close to me in the operating room, I fell in love in a way I never have before. I love all of my children equally, of course, and I fell in love with each of them in different ways. With Isaac’s, it was like all the bonding that I hadn’t been feeling over the 34 weeks of my pregnancy hit me in one sucker punch of adoration. I cried when I heard his cry for the first time, and then when I actually saw him, I cried again because of how much I suddenly loved him. 

I have a special bond with all three of my kids. Sam is my partner in crime. Carrie is my little princess. But Isaac is kind of my person, and he has been since the day he was born. When he was really little and the twins used to nap in the mornings while Sam watched TV and I dozed on the couch, Isaac would wake up fussily about 45 minutes in and not relax until he was resting against my chest. I know it’s not safe to sleep with your kid like that, but we did, me with my arm gently around him and him listening to my heartbeat. 

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Something about the way he viewed and interacted with the world clicked with me, the way it didn’t quite click with Sam or Carrie. Not to put too much stock into what’s a glorified Quizilla quiz, but Sam and Carrie are huge extroverts with a desperate need to be seen. Sam’s favorite words are, “Hey mom, look at this!” and Carrie has taken to putting both of her hands on my cheeks so that I can’t look away from her while she babbles in her little baby tongue (probably about Elsa or Darth Vader; she’s quite articulate). I love them. I love singing and dancing with Carrie. I love Sam’s neverending rambles about Minecraft.

Isaac is on my wavelength, though.

Isaac’s way of showing he loves you is first to give you things, and they don’t always make sense. A couple of days ago, he saw his speech therapist for the first time in well over a month (because vacations and holidays make schedules weird), and he was so excited to see her that he brought over a pair of pants (Carrie’s) and one of his blocks; when she put those down, he rushed away to find something new that she might like (his brother’s stuffed puppy and an old cracker). 

He’ll look at you until he’s used to you, and then he’ll ignore you completely… for the most part. When he’s acknowledged and understood the people in a given space, he’ll mostly make his own noises–lots of loud “AAH!!” or just random babbling–while figuring out the mechanics of things or building his own stepladder to something he’s not supposed to reach (read: having a Christmas tree has been fun). You can call his name until you’re blue in the face, but unless interacting with you is his idea, he’ll ignore you completely (again: fun times with the Christmas tree). He’s so insanely clever with figuring things out; he can turn things on and off again with buttons that are completely hidden from him and supposed to be so. He experiments with how things move and work, and his absolute adoration of lightswitches is both adorable and aggravating in the same breath.

If he does want to play with you, you do not get a choice in the matter. If you ignore him when he comes over to you, he yells in your face until you pay attention. He climbs into your lap like the little mountain goat that he is. If he wants you to move your hands in a certain way, he adjusts your fingers, your wrists, deftly puts everything where it ought to be with gentle movements, and then moves himself into place to play whatever game you’re playing (today, it was “got yer nose!” and he pushed my thumb between my middle and forefinger then smashed his head against my hand several times to make sure I understood what he wanted). 

But when he loves you, oh, when he loves you. He climbs up on you and hugs you, his right arm tight around your neck, his cheek resting against your right shoulder. And he stays there, content, holding onto you. He does this in the morning and he does this at night, and he does it if something upsets him. He’s moved away from giving kisses (except to his sister, because they both think it’s hilarious that someone small like them exists in the house), but when he’s tired, he snuggles, his head nestled against your left shoulder, his body relaxing against you, releasing all the tension it usually holds. He doesn’t say your name (except when you’re not around to hear it), but when he sees you, his entire face lights up like a sunrise. He doesn’t scream for joy like Carrie or start telling you Every Little Thing like Sam, but you catch sight of that smile and you’re in love.

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Isaac, my sweet, lovey boy, has autism.

We’ve suspected for a long time, even longer than you’re supposed to suspect (they won’t do tests until your child is eighteen months old); something about him just pinged something in me. Today, we had an evaluation done to learn if our suspicions–and those of our EI specialists–were correct, and they were. He’s autistic, neurodiverse, his symptoms only setting him apart from a neurotypical child of his age a very little bit. The skills that would pull him out of even that diagnosis are inconsistent, at best, and so he is autistic, and so he qualifies for interventions. 

I’ve been trying to parse my feelings on this since we left the doctor’s office around 2 this afternoon, because they’re hard to parse. On the way in, I was crying and hoping that if he had any neurodiversity, they’d see it so that he wouldn’t grow up thinking that he was bad at being a person but instead knowing that his brain just works in a different way. For a heartbeat in the office, I was terrified that they’d adopt a “watchful waiting” approach, which is the conservative way of doing things for a child so young like Isaac (who, although he’s technically 21 months old, actually falls into the category of being about 19 months old because yay, prematurity). But they didn’t. He is autistic.

The trouble I’ve had since is that (a) the next steps are daunting, to say the least (please, please, please let this be something our EI services coordinator can help us with), and (b) I hate the way therapy and services get discussed. 

For (a) they gave me an enormous packet of information that I didn’t have a chance to read through until I got home because the evaluation was in the middle of Isaac’s naptime. Kyle got to it before I did, as I was sitting there and hugging my exhausted child, and he kept asking me what certain paragraphs and sentences meant and what we could do with them and if I’d have to be driving all over the Commonwealth to get Isaac to all these therapists, and I honestly had no idea how to answer him. There were so many recommendations and ideas, and it was all so overwhelming. 

It’s Christmas the day after tomorrow, and I’m not going to try and dive into everything right now because even if I did try, nothing is open. I don’t know if anything will be open until after the first of the year, which is unhelpful, but at the same time, it kind of grants some breathing room before everything changes again.

I know a lot of it will probably be groups and small classrooms, which is something I’ve been wanting for Isaac (and Carrie) for a while, but is also something we couldn’t afford to do privately. With this recommendation, I hope they’ll get that chance for socialization that I can’t provide them; it did Sam so much good when he was their age, and I’d not be surprised if it sweeps away those last bits of prematurity clinging to them. 

I know a lot of it will be ABA, which terrifies me on a lot of levels because I don’t know what it entails, and a lot of the autistic adults I’ve read stuff from and spoken with have given ABA harsh criticism. Our insurance won’t cover therapies like Floortime or RBI because they don’t have the bodies of research devoted to them that ABA does, and we just can’t afford to pay out of pocket. And it’s like… I’ll take the ABA, but only as long as Isaac’s therapists have the same goals I have, those being not to erase or cover up his autism but to help him find ways to communicate his wants and needs to a world built for neurotypicals. I don’t care if he’s flapping his hands or spinning or stimming in a way that makes people stare, as long as he’s not hurting anyone.

Which brings me to (b) because all of the therapy and services seem geared towards “curing” or “reversing” his autism, and I’m just like… that’s not? how it works? I don’t want to cure or reverse anything about him. He is my baby. He is a piece of my heart. I do want him to be able to communicate with us for his own sake, whether that means we all learn ASL or he has a tablet where he points to pictures or he actually expresses things verbally. I want him to be happy, and I want him to be able to take care of himself, however he can, once Kyle and I aren’t able to do so anymore. 

Like the way they were talking about therapy just really turned me off… they were saying that because he’s so young, ABA could give us a complete reversal of symptoms and he wouldn’t be autistic anymore. And I just… don’t want him to be not autistic anymore. I don’t want to train that out of him like he’s a puppy with bad behavior. I want him to be able to talk to us, I want him to be able to focus his attention and take care of himself and cope with sensory overload (or underload, he seems to be something of a sensory seeker), but I don’t want him to stop lining up blocks and balls or taking apart toys to make them work differently or spinning or flapping his hands when he gets excited. That’s part of who he is. I don’t want that to go away. 

GOD I hope the ABA people are open to me saying all of this. I’m not trying to get him therapy in order to remove autism from the equation. I’m getting him therapy to help my autistic son cope with a world that doesn’t understand how his brain works so that maybe, when he’s 36 years old assuming the world doesn’t burn to a crisp by then, he won’t have spent a lot of his life enumerating things that are wrong with him (weird, unprofessional, antisocial, too quirky, off), but will instead be able to say that he’s a delight who just happens to be autistic. That he’ll be able to plan for that when searching for work or meeting people or socializing so that he can live the absolute best life he can.

So that’s where I am, emotionally. He’s autistic, and I don’t feel at all sad about that. If anything, I feel a little happy, which a lot of people would probably find weird, but he really is my person. I get the way his brain works. I appreciate it. But I’m scared of therapy, and I’m angry about the language used, as if it’s trying to delete who he is because it doesn’t fit into a neurotypical mold. I don’t care if he flaps his hands or spins or lines things up in a row or is obsessed with trains. I just want him to be able to say, “I’m hungry” to people who aren’t me (I can 100% tell when he’s hungry without him using words) and then be able to step away if the world is too much for him. I want him to know who he is, and that he’s incredible, even if he doesn’t fit into a neurotypical mold. 

And I’m afraid that, as we move forward with therapy, I’ll have to choose between helping him communicate and have a sense of self and having him forced into a mold that doesn’t fit him. 

All about the boys…

I have a whole blog entry in my brain about the holidays, but I’m not going to write that now because there’s going to be too much to talk about as we go forward, like Thanksgiving and Sam’s Christmas program and the Christmas party at Kyle’s office and Isaac’s autism evaluation (more on that in a second), and I just want to take a deep breath before plunging into things, SO.

giphy

We had Sam’s first ever parent-teacher conference about two weeks ago, not because of anything bad but because the teachers at his school like to make sure everyone is on the same page when it comes to kids’ progress. Sam had a half day that day, and he got to hang out at home while Kyle and I made ourselves look moderately presentable and headed to the elementary school for the conference.

It was weird, from my perspective, to be going in for it because, of course, I’ve never been on this side of things. I’ve never been a teacher, either, but usually, I’d be the student stuck at home or someone roped into doing check-ins or what-have-you while parents milled about. And, really, the only parent-teacher conferences I remember at all happened when I was in high school; and even then, I only remember the reports about two of my classes (pre-calculus, which I was failing miserably–my dad said of my teacher that he looked like was stoned out of his brains, and in retrospect, that makes me a lot more forgiving of said teacher; and art, where my art teacher got really excited because of the way I’d stored some of my work).

But it was still weird because, I suppose, I didn’t have anything to worry about. Sam’s a smart kid, and it’s kindergarten. We haven’t gotten any notes or calls from his teacher about his behavior or progress, so I knew going in that he probably didn’t have any red flags flying that would make me want to wear a cone of parenting shame. Instead, Kyle and I ambled through the empty corridors of the school, admiring the artwork on display for our benefit (including Sam’s book of writing exercises). I felt very grown-up doing so.

(shown: Sam’s self portrait and Halloween story from his writing exercise book; the Halloween story explains in the corner that rather than describing Darth Vader to the teacher, he just made Darth Vader noises)

And then we met with Sam’s teacher, who is pretty awesome. I think teachers nowadays often tend towards awesomeness, especially in higher-funded schools (we live in a tiny town with a pretty high average income, which leads to at least decent funding for the schools), but I still like to sing the praises of awesome teachers because honestly, they could get praised from morning to night and it still wouldn’t be enough. They take on our kids every day, twenty of them at a time, and somehow manage to keep them from burning the building down AND ensure that they learn something. Teachers are superhumans. 

And Sam’s teacher is a superhuman.

kid

And thankfully, we were all on the same page about Sam. On the plus side, she gushed about his engineering mind, talking about how he’d built a billboard of the numbers 7, 8, and 9 out of Legos (Kyle and I were highly impressed but not surprised; this is the kid who saw a picture of a camera on the side of a Lego box and built it just from looking at the picture) and how he’s excellent at any sort of kinetic learning, which… again, no surprises here. If this kid is allowed to move and build and do things with his hands while he works, he’ll be at a college reading level by the time he’s seven, I’d bet anything. 

On the flipside, he’s not an overachiever in all areas because nobody is. His teacher seemed concerned about three particular things, one of which made us giggle and another of which made us nod in agreement. 

The uninteresting bit was that Sam is struggling with rhyming. That seems like a weird thing to struggle  with, I thought, but once I worked with him on it a little bit, I started to see the issue. Sammy is, as it turns out, a sight reader now–he knows words by sight, not necessarily by phonics, and he knows that certain combinations of letters make certain sounds but not necessarily how to replicate those sounds. He rhymes pretty well when he’s not looking at words written on a page–he comes up with rhymes to really weird words that I wouldn’t even think of–but when words are written down, he has a hard time because he’s trying to see which words look alike without thinking about which words sound alike. 

So he’s in an RTI (response to intervention? I think?) group, which is basically remedial rhyming, and son, that is nothing to be ashamed of. I’m here, your 36-year-old mother, having needed a year’s worth of remedial gym. Like who in the world needs remedial gym

(actually, now that I’m thinking back on it, it was probably more than a year of remedial gym, since I remember doing it in second grade, too)

giphy-1(shown: why I had to do remedial gym)

On the giggly side of things, Sam apparently makes sound effects whenever he does anything. I think we’ve managed to tune this out at home, but it’s to a point where he’ll make spaceship noises as he’s bringing a marker over to color something or be like, “Here comes the T! T-t-t-t-t-t-t…”which… yeah, when his teacher gave us that example, Kyle and I basically fell out of our seats laughing because oh my god. That is the most hilarious and adorable thing  ever, ever. I am storing this up in my brain archive and on this blog so that it can become a story that we tell about him when he’s much older, as our parents tell stories about us (like the time I asked my dad to kill a piece of dust that looked like a spider or the time Kyle tearfully spewed the Where’s Waldo beefaroni he’d long begged for all over the house). It’s a treasure. I love it.

And on the “we knew that” side of things, Sam’s teacher let us know that he struggles with what she calls “flexible thinking,” which means that he’s very, very stubborn. And… yeah. He really, really is. This kid hates change, and has hated change since he was big enough to know that things were different from how they’d previously been. We always brace ourselves at the beginning and end of school years because change always prompts restless nights and stress in him, often ending in tears. We talk him through it, we give him social stories to help him cope, we help him with countdowns, but in the end, he always ends up struggling. 

It’s one thing I don’t know how to help him with. I’m stubborn myself (cue Kyle looking over my shoulder as I write this saying, “YA THINK?”) and it’s not something I’ve either managed to stomp out in myself… nor really tried to stomp out, because when applied correctly, stubbornness is a really powerful thing. Digging your heels in, saying, “no, you move,” all that… it’s good stuff. But you need to find a balance and recognize that some change is good, that sometimes, different is positive. 

BUT that’s also something that you can tell and model for kids until you’re blue in the face and they’ll still not get it because that’s what being stubborn is. This way of thinking and behaving is safe, so I’ll stick with it, because I don’t know what will happen if I don’t. 

Yeah, I get it, son. And I’ll always be here to tell you that it’ll be okay if you try something new or do something different. It’s hard right now; you’ve had a wild past two years (which is nearly half your life so far) that’s been full of changes, and every one seems scarier than the last. And soon enough, you’ll have the life experience to realize that change isn’t always bad and that you’ll almost always be okay on the other end… and those times when you’re not okay, you’ve got people who love you supporting you and taking care of you. 

But for now, your dad and your teachers and I will all be very, very patient with you as you learn flexible thinking. 

And then on Isaac’s side of things, we’ve got an appointment for his autism evaluation!

yay

This is a pretty exciting thing–waiting lists for autism evaluation can be upwards of a year and a half long, but because we worked with Early Intervention and they administered a series of tests beforehand to narrow down his issues, they were able to get in touch with the local medical group that does screenings, and that group contacted us almost immediately to set up an appointment. What’s more, the appointment is before the end of the year–December 23, to be exact. 

I’m really relieved about it on so many levels, and at the same time terrified, more of what comes after diagnosis than of the diagnosis itself. I want him to get a diagnosis because that means that we can target his therapy so that he’ll be able to understand us and express himself, and hopefully also be able to cope with a very crazy, very noisy world around him. I’m not looking to tone down any symptoms he’s expressing–rocking, spinning, stimming in other ways–because I literally don’t care about that at all. It’s what you need to deal with life in the noisy 21st century. What I care about is making sure that he’s not getting frustrated because he doesn’t understand and can’t be understood. I’ve been there. It sucks. 

But that’s what scares me about therapy. I’ve heard a lot of horror stories about various autism therapies, and don’t get me started on my absolute loathing for Autism Speaks. Isaac’s services coordinator didn’t help with that when she was leaving the other day after helping me make a new services plan for Carrie (who, the little imp, was demonstrating all of the skills she refused to demonstrate during her most recent evaluation, sigh). She mentioned that Isaac would be screeching a lot once he started autism therapy, and while I get that on a lot of levels (because it’s hard to go from “mommy just get me what I want, you know what I want, even if I’m not saying it” to “oh, I have to use words”), I’m still afraid. 

I don’t want anything that’s going to try and “cure” him or try and suppress things about him. He is who he is, and he’s perfect. And I don’t want to suppress his symptoms or hide who he is, either. I just want him to be able to communicate. 

Sigh. I know I’ll be able to talk about this with his therapists, but it still just nags at me. And I should probably find a therapist myself to help me work through everything about… well, everything.

After the holidays. I’ll look into getting a new therapist after the holidays. Right now, I’m just going to swan dive into the crazy and paddle like hell until I get to the other side. Until next time…

swandive