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. 

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