Hello from Planet Nebulon

I didn’t mean to fall off the face of the earth. Really, I didn’t. But these past few months since Coleman’s autism diagnosis, it’s been like we do suddenly live in whole different galaxy. I keep thinking I’ll shake it all off and things will “get back to normal” again, which is hilarious (I know!) for anyone who is even a little familiar with me and/or my blog. I’ve never been “normal”, my life has never been “normal”, and now I have a son who will never be “normal” either. In some ways I embrace it, and can even own—hell, proudly flaunt!—the non-normalness. A lot of days, though, that’s just not so easy.

Since December, I’ve poured my heart—and every last drop of still-also-caring-for-a-baby energy I can muster—into (a) trying to get services for Coleman as soon as possible and (b) securing him an appropriate placement for kindergarten in the fall. All the while, I’ve had to dive headfirst into a crazy, learn-as-you-go crash course on the NYC Department of Education special-ed system, the “special needs” world in general, and autism specifically.

So far, I have (after months of politely but firmly chasing our case through the city’s pre-school special ed department) been able to get Coleman speech/occupational therapy, along with a SEIT—a special-ed teacher who works one-on-one with him for 3 hours each day in the mainstream Montessori school he’s been in since age 2. Ideally, he would’ve been in a more specialized preschool for kids with similar needs, but at this late in the game this was the best “band-aid” I could get to help him through the remaining pre-K year. And it’s been very helpful. He is catching up somewhat academically with his peers (he can write his name now!), but his social/behavioral differences are becoming more and more apparent — and he needs a great deal of re-direction and facilitation for everything. It is kind of painful watching him trudge through these last few months there, but it’s the best we can do for right now.

I won’t bore you all with the details, but investigating the kindergarten situation has been like a full-time job in itself. Man. We were warned right off the bat by everyone (including Coleman’s psychologist) that our zoned public elementary school would likely not be able to accommodate his needs — so we also spent a lot of time touring, applying to, and interviewing at private special-needs schools. That was a surprisingly intense process on many levels, and competitive, too, in that annoying way everything in NYC can be. Then, when Coleman got accepted at three of them, I was shocked, proud and delighted. But then I remembered, Oh, these are special-needs schools. Yeah…

Long story short, we’ve accepted a spot at one that we really think is perfect for where Coleman’s at right now.  Although it’s what you’d technically consider a “private” school, it is one of many that the state(?) actually funds for disabled students who can’t get the services/level of support they require at their local school. Something about every kid’s right to a free and appropriate education. The catch is, to exercise this right for your kid, you’ve got to show up at meetings and make a case, and hire a lawyer (one that specializes in special education… can you believe it?) — and this process is still dragging on for us, so it’s not 100% certain yet what’s going to happen. But if this works out like it’s supposed to, I will feel a million times better about the direction things are going in for Coleman.

Oh yeah, and we have this baby, too. Rosemary is turning A YEAR OLD in a few weeks. This poor kid. She is an angel. So easy. So sweet. And growing up way, way, way too fast. I wish I had energy left to write more about her right now. Maybe I will later. There is so much more I want to write about. There have been so many surprising feelings/experiences that have come up for me, watching this baby blossom amidst what’s going on with Coleman. Good and bad. My world is so rocked in every way. I feel like this all warrants a new blog, and one where I don’t use my kids’ real names because I am not just realizing that maybe I should never have, and well… how do I fix that now?

But for now, at least, a picture. And yep, that’s Coleman in his police costume. I was just grateful he had finally given the vampire a costume a rest (although just today he begged to go out riding in his bike in it, but we said no).

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Autism, autism, autism

Thanks for the thoughtful comments regarding my last post. I wish I’d been able to post more lately, but it’s been hard for me. Not just for time/logistical reasons, but emotional ones, too. I am ambivalent about opening the “autism can of worms” on this blog, and concerned about offending more people in even more ways with my beginners’ thoughts and experiences as I try to find my way as a special-needs mom (and I hate that term, “special needs”, but is there anything better?).

As one of the commenters pointed out in my last post, perhaps I am focusing too much on Coleman’s autism as a disability. I know there’s a whole world out there of folks who embrace neurodiversity and autism pride, etc. And I think that’s great — it’s much more my cup of tea than the folks who stick their kids in hypobaric chambers or whatever to try to “cure” their autism. Yet it is jarring to suddenly be having to advocate for my child as a “special ed” student, and look at all these therapies and services which are intended for a kid who is struggling in more ways than I even realized until now. It is an adjustment to know your child has a disorder (which, again, I know might be an offensive way to put it, so “atypical-ness” if you will) of the brain that will be lifelong, and have no idea what this will mean exactly.

Anyway, it’s probably no surprise that autism is on my mind a lot these days. Autism, autism, autism. There’s just so much to learn — and so many different views on it, etc. I wish I could think of other things. And fortunately, my awesome baby Rosemary distracts me quite a bit. Yet my mind often goes back to the autism stuff, and I am reading about five books at a time, trying to get a grasp on things. Some stuff makes me feel hopeful and relieved. Some stuff scares me and makes me feel like shit. The worst is when I panic at how late we were in getting Coleman diagnosed, and how we could’ve had him in so much early intervention if I hadn’t let myself get talked out of seeking help for him. Yet then I realize how well he is doing, even without having had any help yet. Especially things like imaginative play — which is one of his biggest skills, though that’s usually quite a challenge for kids with ASD.

Hopefully, I can write more about this soon. And I can tell I am going to want to write a lot more as we really get going on this journey. It’s also been really helpful reading blogs of parents with autism — and I will admit that I mostly really only want to hang out with other autism families right now (or those rare others who “get it” and haven’t pissed me off). But I am not sure if I should be doing it here, on this blog, and with my kids names and photos all revealed for real as I have. Yet I am a pretty open person and I don’t feel shame about any of this, so I don’t know. It’s confusing.

Until next time, I wish you all a very Happy New Year. Thanks for being there.

wigout

Yep.

I often struggle to come up with a title for my posts, but for some reason this one is extra super-hard. Is this too serious of a matter to try to be funny? Would it sound too melodramatic to say what my brain is really screaming right now?

My sweet baby boy has autism. 

The psychologist and social worker at the child study center had been preparing us during the weeks of testing that have been going on, so we were totally expecting it once the ‘official’ diagnosis was finally given to us this week. But, you know, there was still that part of me that had hoped it wasn’t really for real.

What a roller coaster ride this has been. There are about a gazillion parallels with the infertility experience, and I am sure I’ll write more about that later. It’s all just so much.  So much.

For a couple days there, I was feeling incredibly relieved. Happy, almost. Just to finally be able to appreciate Coleman for what he is instead of always beating myself up for being a shitty parent because he never acts like/does what/responds the same way all the other kids I know do. I’ve already been in full Action Mom mode for weeks, and now I’ve put my foot on the accelerator even more — especially upon learning that some of the special schools being recommended for Coleman have December 31st application deadlines (!). It’s good to be able to Do Something, and I have had many moments — new discoveries made by networking with other special needs parents, getting through some new bureaucratic milestone on the way to getting Special Ed services — to pat myself on the back about and say YEAH! I am making shit happen!

Yet there are also times like now. Middle-of-the-night, suddenly-awake, scared-times that kinda skirt along panic-attack territory but are held at bay by Zoloft, thankfully. But the thoughts and worries, real worries, are still there. And autism is one of the worst things your kid can have if you have access to the internet and are looking to learn more. Jesus. Unfortunately, it seems like ‘the experts’ don’t really know anything at all for sure either. Even the information sources that are supposed to be trusted seem widely disputed.

I’m trying to learn all I can, but I think it’s going to take a while to really start sifting through it all and grab onto what makes sense and will actually help us. And I definitely need to learn to not click on all those really scary stories about murder-suicides of desperate autism moms, or stories about school shooters suspected of having autism. Or panicked message-board moms forgoing vaccines because “waaah-waah-waah the worst thing that could ever happen is my kid having autism.”

Or, most horrifying, the poor boy with severe non-verbal autism who recently disappeared from school IN OUR NEIGHBORHOOD and has still not been found. God, my heart breaks for his family (though I also, in a way, thank them because seeing this boy’s ‘missing’ posters everywhere I walked for weeks really helped me make the final decision to finally investigate my suspicions about Coleman).

While I am grateful my son can speak, at least, and is not significantly impaired, I am of course scared about my son’s future. My family’s future. My future. Autism never goes away. It really does change one’s life. Every aspect of it. It is a disability.

So many people who know about Coleman’s diagnosis are like, “Oh well, you can barely tell — he’s just got a “mild case” of autism, obviously. He’s so sweet! So cute!” 

But I try to imagine his ‘cute’ little quirks in 10 years. His repetition of catchphrases. His meltdowns. His obsession with vampires. His inability to verbally engage back and forth on a meaningful level with another human being. It is terrifying and heartbreaking. I was watching a documentary about autism and that was one thing that really stuck with me. How one father said that age 4, you couldn’t tell his son had it. But by age 8, you could tell just by looking at him immediately. I can see how the disability aspect becomes very, very real the further you move from toddlerhood. My son still gets a bit of a ‘free pass’ with public meltdowns (which, fortunately, are pretty rare — though we had a really awful one this weekend). That pass will expire soon, though.

People keep mentioning Asperger’s. Bill Gates. Some kid they knew who was ‘a little awkward’, but was a genius and went to college and has a ‘normal’ life now, etc. Surely Coleman just has a “little bit” of autism. Hey, didn’t you know someone’s cousin’s friend actually had his kid “outgrow” autism, or have it cured by lots of therapy?

But apparently Asperger’s isn’t even a diagnosis anymore. Autism — lucky us — just underwent a gigantic change in the new DSM-5. There are no longer these sub-categories. It is all just Autism Spectrum Disorder, whether it be what people call “high functioning” (which, apparently, is not even a clinical description) or severely impaired. It is confusing, though, because I can already see such differences even among the “high functioning” kids, and this will come into play a lot as we try to get Coleman into competitive slots in special schools/programs.

Anyway. So much to process. So much to talk about. I know I will want to write a ton about this, but I am mindful that maybe I shouldn’t be talking about it online. I regret that I’ve always used my son’s real name on this blog. I am not sure how to proceed from here, though. I know I’m going to need to write about this. And I can already tell I will need the support of others going through this (flashback to infertility again!).

For now, I continue to feel much gratitude for the things Coleman still does have going for him — and there are a lot of things — despite learning more every day about the things he is really struggling with. It’s pretty awful to hear (today, from an evaluator from the school board) that my kid isn’t even “ready” for kindergarten. Even after being in a Montessori school since age 2 with a curriculum that includes French, Spanish and piano class. What the fuck? In my day, kindergarten was still finger painting and story time. But I guess things have changed.

So much to learn. So much.

The “A” word?

thanksI’ve been wanting to write a post for ages now, but “overwhelmed” doesn’t even begin to cover how I’ve felt since Coleman’s evaluation with the psychologist last week. We thought that would be it and we’d have our answers, but it has just opened a gigantic-ass can of worms — which I kinda knew it would. And, well, we are now  looking at the possibility of Coleman having autism… or being “on the spectrum”… or something. I don’t know what they’re calling all that these days.

After Thanksgiving, Coleman will have a gazillion more tests, and my husband and I will be interviewed about him for several more hours. Supposedly we’ll end up with a clear diagnosis by mid-December. So far, it is at least very clear that he has delays in receptive and expressive language — to an extent he will need special education when he starts Kindergarten next fall. I am being urged to get all these balls rolling with regards to that, and it is blowing my mind how confusing all of this is (figuring out NYC school stuff in general is already bewildering enough on its own). Not to mention how scary it is dipping our toe into “special needs” and potentially labeling/stigmatizing our son right from the start as he enters school. I am beyond lost. And I can’t stop feeling so guilty/mad that I didn’t insist on getting him evaluated earlier — even almost doing it once a year ago despite no one else thinking it was necessary. But then not doing it. So much time lost.

Fortunately, we’ve got a lot of folks to talk to right now. The center where we’re having the evaluation has been very helpful and referring us to things left and right. I have been networking like crazy with moms I do know in the neighborhood who’ve been putting me in touch with people they know — and I am meeting some really cool moms with special-needs kids (who, frankly, I have much more in common with anyway). People seem eager to share, and I know we’ll figure this all out. It just seems like too much right now. With a baby, especially.

So much more I want to write about. No time. And must make a pie. Happy Thanksgiving! The photo is of Coleman’s coloring of a pilgrim. Something about it depresses the shit out of me. But I am still filled with gratitude. Lots of gratitude.

Come what may

Finally — finally! — we have Coleman’s evaluation scheduled, and even have two babysitters booked for the occasion (such a fancy and expensive one it will be!). One sitter will stay home with Rosemary, and another will meet us in the waiting room to keep Coleman occupied while my husband and I talk to the psychologist first. The appointment is a little more than a week away, and it definitely could not come soon enough.

I’m trying to not get myself too worked up about Coleman until we learn more and have this visit, but shit he’s been a handful lately (even when he’s having a “good” day). There is always so much screaming and door-slamming and stomping and throwing of things going on in our apartment, it is a miracle our landlord (who lives downstairs) has not complained — or kicked us out yet. It does make me hesitant to complain to her about our heat not cranking on, and our place being too cold many days. Definitely would rather wear a couple extra sweaters than rock the boat right now.

There is so much I’m sad about with Coleman right now. I do not know how much is because he’s got problems in his brain that make it so hard to understand/deal with him, versus how much is him leaving babyhood behind and becoming a “boy”, versus how much is the weirdness of suddenly having a baby attached to his mom 24/7 and the whole family dynamic changing enormously. I also remember reading somewhere that at age 4, a boy’s testosterone levels go through the roof.

Suddenly, he calls me “mom” all the time. I am definitely not “mommy” any more, and that makes me really sad. Isn’t this too early for that? I feel like he is deliberately distancing himself from me, but maybe that is healthy? I don’t know. Often it just feels like hate and anger. He calls his dad “daddy” still. Also, he is so gangly and skinny and boy-like now. And his own person. I can no longer scoop him up and cuddle him at will. He wipes away my kisses. I knew this was coming someday, but it still just seems too soon.

Based on what I’ve read so far, I am strongly suspecting he’s got some sort of Autism Spectrum thing going on — and it appears the psychologist ‘specially selected’ for us based on our extensive pre-appointment questionnaires has a lot of expertise in that area (again, shouldn’t read too much into that, but still). I don’t know. At least, lately, I haven’t been beating myself up about the whole thing. Mostly, I am just focused on wanting to get help in any way we can.

Meanwhile, things are going pretty well otherwise. Rosemary is wonderful, and it is such sweet refuge to bundle her up close to me and take walks and bury my nose in her super-soft poofs of new baby hair. At 5 months, she is over 17 pounds and I know soon will be too big to carry like that all the time — and I’m like no, please don’t grow up yet. I need this simple sweetness. This love, when my boy seems to hate me now.

Also, I will toot my own horn and say I’ve lost 12 pounds so far on Weight Watchers. I have no idea why it’s been going so well — I’d say a lot of it has to do with breastfeeding exclusively still, such a big baby too. I have been pretty sloppy about my Points-counting and whatnot, so I really don’t know how much is just losing post-partum water weight or whatever, but I’ll take it. It definitely provides some comfort to me when things are feeling awful and unmanagable, and I can say well, at least these pants are loose and how much better is that than them being too small…

Anyway, life is good. Much to be thankful for. Just hoping to get better equipped soon to give my son the best I can.

Evaluation anticipation

Just as I thought, Awww, I’m over-reacting. My son is such an angel! He was just having some bad days, we had one of those really rough mornings. The kind where Coleman screams bloody murder and thrashes against our efforts to put him in his school clothes, and has to be dragged outside wailing and I am sure the entire neighborhood is listening to it all. Again. It really is a miracle our landlord (who lives downstairs) has not complained — I worry so much about this, and about trying to find a new apartment we can afford that can also handle our noisiness.

Ugh. It is so jarring dealing with this so early in the morning (even though it was my brave and endlessly patient husband who was technically handling it). So hard to go about your day with a good feeling. I feel so shaken and sad and guilty and just everything bad. Rosemary smiles so hugely at me from the Jumperoo and I try to shake it all off and be new for her. I try.

I am getting things together to make an evaluation with a psychologist happen soon, hopefully. The paperwork is just so daunting. I get really depressed trying to get through the life history questionnaire, and put so much work into identifying all these bad things about my son. I have to do it in small bursts (well also because I’m holding a baby at the same time). Coleman’s teacher has a questionnaire to fill out, too. I also found it really depressing talking to her about it — going off into a private office at the school a few minutes before pick-up, this dread in the pit of my stomach like I was in trouble somehow. His aggression doesn’t really seem to be an issue at school. It’s more like he’s spaced out in his own world, I think.

We are going the private route. A friend who works for the public school system said it’s best to avoid getting your kid wrapped up in a label this early if you don’t have to. And, well, it just seemed way easier (I am not in the mood to fight through red tape right now). It’s a university program — same university our fertility center is associated with, so very well-regarded. It’s not the cheapest option in the world, but our insurance is decent and we will be getting a pretty good out-of-network reimbursement. Also, you have the option to work with almost-100% doctors (fellows? I don’t know the technical speak… I do know I had countless fellows probing me with ultrasound wands during my cycles) for much less dough, which is appealing to me, too — though we are “treating ourselves” to the senior psychologist for the eval.

I am trying to feel good about this. At least in a yay, I’m finally at least DOING something and getting some real information kind of way. But it’s hard. I just think of all of the Coleman’s peers who are instead doing normal things like going to Halloween parades and parties and playdates (and not freaking out) this weekend. Weekends kind of suck lately. And I love Halloween and autumn wish we could go to all these fun things. But it’s not worth it anymore. The odds are huge that Coleman will freak out, and we’ll have to leave. Or if we try to do something social with people we know, Coleman will hit the other kid and we’ll have to flee in shame (we’ve pretty much given up on that though, anyway — and no one will hang out with us!).

How did things get this bad? Have all of my mom “friends” been watching and thinking to themselves, all this time, Whoa nelly, that kid is fucked up! Or maybe just, That is one shitty and ineffective mom! Maybe the ones that stuck around the longest have just enjoyed feeling superior by comparison? I know *I* am guilty of feeling hugely relieved when someone else’s kid is the one screaming and pushing toddlers in the sandbox. I love when other kids have meltdowns. The crazier, the better. Makes me feel like Mom of the Year!

Are all these other parents really so fabulous at parenting somehow, and I like missed the class? Or are they just really good at hiding their problems? Sometimes I also feel like — by living somewhere like NYC — your parenting is so out in the open a lot, and that’s hard. With no backyard, no car, no private walls, it’s all out there — including the super-icky ugly stuff. I can’t even begin to count the number of times I had to wheel a screaming, thrashing Coleman home from the playground in the stroller past blocks and blocks of old ladies shaking their heads and offering ‘helpful’ commentary the whole way.

Hopefully this is just a small glitch and we’ll get through this and become stronger for it. I am very eager to learn ways to help Coleman, and to figure out what it is I’ve been doing wrong that seems to be making things worse. Most of all, how can I do things better this time with Rosemary?

Fear and loathing at the field trip (a.k.a. Is there a problem or am I the problem?)

Last week, Coleman’s school had their annual fall field trip to a farm (or, well, as close as we get to ‘farm’ in NYC, in the outskirts of Queens). While I love the concept of field trips and farms, I was honestly kind of dreading the trip. The previous year, Coleman was terrified of everything — petting or even looking at sheep, going into the ‘butterfly house’, riding ponies, etc. — and it was crowded and stressful. My husband and I tried to encourage Coleman and gently nudge him toward his peers, but that quickly made things worse and he was then hitting us as we tried to help calm him and get his tantrums under control. Normally, we’d say ‘screw this’ and leave the scene the second things got really shitty. But because we’d come on a bus with the school, we were trapped for several hours of this. Not to mention, embarrassing ourselves hugely in front of Coleman’s peers and their parents the whole time.

[As a side note, to make things even more exciting, I was also waiting on another beta call during this time. But that’s neither here nor there… or maybe it does mean a lot.]

While my husband was saying we should just keep him at home for the trip this year (or rather, home with me all day), I felt like I should give it another try. Plus, seeing him at the school’s open house recently kind of left out of his circle of classmates and being called ‘a dreamer’ by his teacher made me think it would be good for me to try to be around these kids up close and maybe befriend their moms. Try to work some playmate-arranging diplomacy. I even baked some damn apple bars to bring along, hoping to break the ice. Plus, I talked to his teacher — telling her about last year and asking if she had any ideas about how to make this year go better (note: his teacher wouldn’t be there, which I think kind of sucks about these field trips — instead a pool of assistant teachers from the other classes was chaperoning along with each child’s parent). She just kind of politely blew off my concerns with a ‘oh, he’s doing much better lately! he’s been playing with the other kids.’

So, well, things started off promising. Coleman loved the ride on the big yellow school bus. But then, the second the kids poured out onto the grounds of the farm and were preparing to leave on the tour, Coleman freaked the fuck out. He was crying and screaming, “NOOOOOOO! The animals are scary!” and was just hysterical. I kindly and patiently tried to nudge him forward slowly — reminding him that a few days before, I couldn’t tear him away from the pig pen at the place where we’d picked apples. He’d loved those pigs! But here… no go. And of course — even among a group of kids from age 18 months to grade 4 — he was the only one freaking out.

I was very grateful for the nice educational director at the farm, who suggested we check out the big, lovely herb garden instead. And we spent like two hours alone together there, inspecting and smelling the cool fragrant plants (though mostly that was me — Coleman was more interested in running back and forth to the big farm-y windmill a million times). I was also grateful I’d had to foresight to pack a few books, so we were also able to sit at a picnic table reading together a lot. That helped me recover a bit of ‘good mom’ feeling, at least. But every time I tried gently suggesting going toward anywhere else, or to catch up with the other kids, Coleman would start freaking out again.

Somehow, I was able to stay pretty calm during this and make the most of the situation — despite my frustration and embarrassment. But inside this voice in my head was screaming, “Oh my god, this kid is so obviously special-needs! Why can’t anyone else acknowledge this and help us get the help we need?!”

And this voice still runs through my head a lot, though there’s a competing voice saying, “Put on your big-girl pants and parent this kid, dammit! You are being so lazy and letting this kid run the show. Get control of things! Stop being a doormat! If your kid turns into a psycho, it’s only because you indulged him too much!” Etc, etc, etc…

I know I’ve mentioned on this blog at least a few times over the past couple of years that I’m kind of worried that there’s something not quite right going on. I don’t think it’s anything super-major — somehow, my son has gotten through two full years of Montessori school with very few complaints ever from his teachers (and that complaint has always been hitting/pinching a peer, but seems to be a short-term issue each time). It’s also seemed pretty obvious to me that he’s been pretty slow to become more verbal in a way you can really communicate back/forth with him, but his teachers always said he was doing just fine when I brought that up.

Last year, I pressed his pediatrician on the problems of hitting (both his peers sometimes, and my husband and I often at home while in tantrum-mode) and my concern about possibly delayed speech. In terms of the discipline issue, the doctor pointed out that my son seems pretty in-control in most situations, most of the time — and if he had a real ‘disorder’ or whatever, he wouldn’t be able to control himself at all. However, since I had brought it up on two visits, the doctor said I could get him evaluated by a neurologist — that would be a first step. And he gave me a couple names. But he seemed to do it more to shut me up, rather than out of any concern himself. I really adore this pediatrician, and appreciate his laid-backness. Yet sometimes (and I don’t know how to say this without being an asshole) I see how a large portion of his patients are immigrant families with lots of children, many without insurance, and I feel like this neurotic, over-privileged white lady who just needs to shut the fuck up. My kid is just fine. He is healthy. We are lucky. Stop looking for fancy brain-problems when so many parents can barely pay for basic care for their kids.

So I went home with the neurologist names. One was located somewhere far off in Queens that would be hard to get to since we don’t have a car. The other phone number just rang and rang and no one would ever answer it. So I researched, what’s “the place” in NYC for evaluations like this? And what came up again and again was the Child Study Center at NYU. All right, I thought!

Then I found out they don’t take insurance. Of course! But I was in the middle of a glut of freelance work and feeling like, okay, we’ll do this $700/hr neurologist visit and just see. I ducked out of my freelance gig at inconvenient times trying to have a private conversation on the phone with the intake lady, arranging the whole thing, getting the paperwork. There were like 50 pages. Questions that even asked shit like what did I eat while pregnant with Coleman. Meanwhile I was in the shaky early stages of pregnancy with Rosemary, nauseous as hell and praying for no more gushes of red blood.

I had planned to take Coleman. Despite my husband not being on board with the whole thing. Despite the money. Despite the millions of pages of questions to fill out, and needing to hand off more for his teachers to complete, too. But I don’t know — at some point it just seemed like too much. Especially when he’d stopped hitting at school and I was trying to take it easy with the hematoma while also working, and I felt sick as hell, and Hurricane Sandy pretty much destroyed NYU medical center for many months, and…

The thing is, there’s so much about Coleman that’s awesome and amazing. When things are going great, I often forget about the problem-times. He’s a very smiley, bubbly, charming, funny, affectionate kid (and cute as hell — we still get endless compliments about his gorgeous eyes, his handsomeness — maybe that lets him get away with a lot?). He loves wearing costumes, dancing and can improvise a song out of pretty much any topic you toss at him (There have been times when I thought, Maybe he’s got Asperger’s? but then I think of these things). He is extremely imaginative and loves engaging me in all kinds of pretend play — often in really inventive ways that surprise me. He’s awesome at riding his balance bike all over the neighborhood, and always stops on his own at all street corners and seems very careful in general with physical play. He loves looking at books and reading together. He’s come pretty far with sharing toys at the playground and sometimes being social. He sleeps well through the night, in his own room. He has recently started eating all these foods he wouldn’t touch for the longest time — even stuff like salmon, asparagus. He is gradually becoming sweeter and starting to learn to play and help out with his baby sister.

But then when things feel bad, they feel really really bad. Maybe it’s all my fault. Or because he missed a nap again? Or maybe it’s all just in my head?

Aggression. The great majority of the time it’s directed at me and my husband at home during a big tantrum where he’s not getting his way. Usually over something really silly — he wants to watch the same episode of Daniel Tiger he’s seen 10,000 times instead of the new Daniel Tiger episode that I dared to suggest, so he comes at me hard with his little fists (though often he stops himself mid-air, too). Or he’s angry when his dad’s trying to get him dressed for school and tries kicking him in the face. Lately he’s been more into throwing things and screaming, which I guess is better than hitting or kicking? But it’s still not acceptable. Especially when he almost whacks his poor baby sister (and wakes her up pretty much every time I just get her down for a nap).

Fear/Freaking Out. I know it is common for little kids to be afraid of stuff. I can remember being very terrified of a statue of a frog with long eyelashes that my grandma had when I was Coleman’s age (we’d still laugh about it until her death a few years ago). But it just seems over the top with Coleman, and it really impacts our lives a lot sometimes. I often feel like I am walking on egg shells trying to work around stuff. The Halloween decorations at our grocery store send him into a shrieking terror, so I can’t shop for food when I’m taking care of him (which is pretty limiting). Same with the drugstore. And there are SO many examples of outings we’ve gone to great lengths to take (museums, playgrounds, kids’ parties, amusement parks, etc.) and he freaked the fuck out and either expressed fear about going inside or an extreme aversion somehow to the whole experience that required us to flee. Sometimes it’s not even a ‘scary’ thing — it’s that he wants to walk a different way home than we’re going and will get absolutely hysterical over it. Perhaps it’s all just a power trip for him, and we’ve fed into it by not fighting him and to stay. I like peace too much (and care too much about looking like assholes in public), I guess.

Frustration/Tension. I’m not sure what to call this exactly, and maybe it’s the same thing as anger. But another thing he does a lot is grind his teeth together (he’s worn his baby teeth down quite a bit) and seem to have this compulsive need to pinch/squeeze/poke, go “grrrrrarrrrgh!” Sometimes it’s in the middle of him seeming happy/playful, but it always really takes me aback. It’s like he has this energy/anxiety in him that he just doesn’t know what to do with, or is wanting to express something he can’t put words to.

Peer Problems. We’ve left the playground so many times because he hits, pushes, or is just too aggressive toward another kid (sometimes randomly, but usually over a toy-sharing type dispute). And it seems we hardly have playdates anymore because of these incidents happening — though I’m not sure if it’s the other moms avoiding us, or me avoiding them out of embarrassment. Lately when we go to places with other kids, Coleman just want to sit next to me and watch — and not get involved with the other kids. On one hand this is easier for me, but I know it’s not good and it makes me sad for him.

The Poop Issue. Yep, my kid is almost 4 1/2, and still poops in a diaper. Granted, he goes and gets the pull-up himself and changes into it. He disappears into his room, says he is going “to the poop store” — it would almost be funny if it weren’t so awful (and smelly). Afterward he is often very reluctant to let you clean him up, and will put up a bit of a kicking-screaming fight. We have tried pretty much all the kind/gentle/bribing/tricky techniques to get him to poop on the potty, but still have not yet just taken the pull-ups away. His pediatrician says that eventually he’ll just poop on the potty on his own and want to, but when? I feel like we should ‘get tough’ on this, but I am not sure that’s right for Coleman.

Patterns/Repetition/Particular Things. This may just be a thing with kids his age, but he loves — for example — watching a cartoon on the iPad and rewinding a 4-second clip of dialogue and replaying it dozens of times in a row (and note, I do try hard to limit his TV-viewing and watch carefully to make sure he’s sticking with pretty ‘benign’ shows… but mama needs a break sometimes, so I can’t say no TV 100% as much as I wish I could). Or if he finds a playful game I do with two animal figures to be funny, wants me to do it over and over endlessly. Or just HAS to wear his skeleton pajamas again (or else, tantrum). Or likes to do a pattern of things over and over again (run to tree at playground, stop pick up rock, spin around, etc) — will get very bossy about wanting me to do it over and over again, too.

Whew. Are you as exhausted reading this as I am writing this? I am so confused. But SO tired of hungrily trying to read every damn parenting book that I can find, leaping on top of every recommendation desperately trying to figure out what’s normal and what’s not, and how to make things better. I just can’t figure out: is he ‘sensitive’? Is he ‘spirited’? Is it just a chemical/wiring thing (I am not exactly Ms. Awesome Mental Health myself, though I try so hard to do my best)? Ugh.

Anyway, I have been combing through the random list of in-network child psychologists on our insurance plan, but haven’t had much luck yet finding someone to take a kid his age (and was told by one that she couldn’t help if it was ‘developmental’ issues… how do I know if he has those or not?). Which has me looking back into the place that sounded really intriguing at NYU, but costs a fortune (but we may be able to get reimbursement for some)?

Kindergarten is coming up so soon. I recall it being this fun-play place, but apparently now Kindergarten is Serious School and kids learn to read and have homework? I signed Coleman up for the Gifted and Talented test they give 4 year-olds to see if your kid is worthy of a decent (free) public education via the gifted program — it is a huge longshot. But I was imagining him even entering the big scary building where they do the test, and freaking out before he could even get inside — and wow. So instead of all these test-prep books and things I was eyeing, I realize I need to get him emotionally prepared for whatever new things lay ahead with school, wherever he ends up.

Just wish I knew how to do that. Until then, I’m just trying not to eat all those apple bars myself.

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“Parenting class” (a.k.a. the rack across from our toilet). I sure would love a real parenting class and am always looking for one, but can’t find anything.

Being visibly at peace with invisible work?

One of the most challenging things to me about being a full-time caregiver to a baby is how it seems like you should be able to get a million things done while you’re home with this tiny person. Heck, mine’s not even anywhere near mobile yet. But most days, I am ‘lucky’ if I get around to cleaning out the cat’s litter box or throwing together a dinner that involves chopping a vegetable. I am not sure how I thought it might be even remotely possible to keep up the freelance-work momentum (I am currently trying to just get paid for the last project I nearly killed myself to crank out when Rosemary was 2 months old).

I recall this from when Coleman was about the same age. I’ve got a bazillion things I always want to do/need to do — and the great majority of it is in service to my kids/home/family. The neverending cycle of cleaning/organizing to keep from feeling overwhelmed in our tiny apartment, planning easy yet remotely healthy meals, buying groceries, packing lunches and sending various permission slips/checks/things to school on the right days, financial admin, researching and navigating the NYC school craziness for Coleman to start kindergarten next year, setting up various appointments, reading the gigantic stack of parenting books I keep meaning to find all the answers from, trying to plan outings/activities, dealing with legal/financial work (STILL!) for my dead parents, pumping milk in case we ever get a date night, maintaining a friendship or two so we can be social/have a playdate occasionally. And really, I should also be updating my professional website and put some time into polishing up my freelance business self-marketing stuff…but, yeah. Isn’t that a pile of outgrown onesies I need to sort out instead?

Phew! And I know that so many moms — so, so many — do all of this ‘invisible work’ PLUS full-time jobs. It is incredibly humbling. I know it’s a huge privilege to be able to not do paid work and care for my kids instead. And I so much want to honor that. Yet I also know I kinda suck at it. I’m not a ga-ga-goo, baby-voice cooing teacher-y type. I know, after forcing myself to way too many MusicandMommyandMe’s etc, etc, that I fucking hate those baby-singy classes with those shakers and scarves and parachutes and bubbles. I hate when I see moms at the grocery store all loudly and show-offly overly-narrating shit to their babies to make every millisecond a learning opportunity. Look, Aiden, a red apple! It’s so round and shiny! How do we say it in Spanish? Man-zahhh-na. That’s right!!! 

My favorite times with Rosemary are when I’m just being with her. Walking around doing errands while she smiles at the world in her baby carrier and feels so cozy and sweet (though increasingly back-breaking!). Or when I’m managing to do stuff in the kitchen while she plays contentedly in her high chair with a toy, or giggles as I sing to her. She is growing not so content with these things, though. She is drooling like crazy and obviously teething and trying to gnaw on everything in sight, but really can’t hold things to her mouth for proper chewing yet. She wants to play with toys, but at 4.5 months can’t really sit up on her own to do so, and gets antsy and tries to fling herself out of the bumbo or bouncy seat.

How hard should it be to sit on the floor with your baby and shake a rattle in her face all day? I know this time is so precious and magical, and that even once the baby’s rolling across the room, everything changes and becomes much harder. Yet I really find it difficult to force myself to leave those beds unmade, to not try to squeeze in all those late email replies while my baby’s in the jumparoo for 10-15 minutes (happy until she makes a big blowout poop and needs a whole outfit change). I’m always thinking that, if I can get enough done while Coleman’s in school, we can have magical time together and the evening meltdown period might go away. Or if I can just get enough done with both kids home before my husband gets home from work, we might be able to relax and have some pleasant ‘adult time’ together between Coleman going to sleep and Rosemary waking up crying and needing a midnight feeding.

Man, this shit is isolating. I love being a mom. I love our family. I am lucky-lucky-lucky times a million. I just wish I didn’t feel so hamster wheel-y all the time.

ppatchDoes anyone have any idea how much work it takes to get your kids to a fucking pumpkin patch and take perfect, adorable Fall Fucking Pumpkin Patch Photos? This was the best we could do this year. We did manage to pick apples, too, while Coleman had like three big meltdowns. And I made an awesome apple pie at home later. Which I can’t eat because I’m doing Weight Watchers (I know I “can” have a teeny piece, but I really dream of just shoving that whole dang thing down my gullet).

The happily ever after

I try to stay away from infertility coverage in the New York Times, but sometimes I just can’t help myself. What’s even worse is when I read the comments on the stories. Today, I read something I just can’t stop thinking about. It was in response to an author’s post about getting a BFP from the IVF cycle she has been chronicling for the NYT. I think a lot of the anxiety/depression I wrestle with is often rooted in fears regarding the things this lady brings up:

I feel bittersweet when I read this post. I too had the double positive 16 years ago. Had the beautiful baby, followed by another IVF baby.

Magazine cover life. Now at 50, I am divorced, broke single mother whose second IVF baby has severe autism. The IVF and the medical bills left little financial cushion as the years rolled on.

I want not only to wish Amy the best but to give her advice to help her achieve her dreams.

Treat this pregnancy as high risk and stop work at 34 weeks. Studies show that working over 34 weeks increases your risk of pre-eclampsia, and pre-maturity. 

Go now to a financial planner. Figure how you will recover from the expenses of IVF. Plan how you will cope financially if you became a single parent. Buy life and disability insurance.

Start putting savings away even if it means dropping your standard of living .

Don’t stay home after the birth. Return to work within a year to keep your job skills current.

Have no more than 2 children. Modern life is too demanding. Pregnancy more risky as you age.

Budget for a babysitter one night a week. Date night must be sacred.

Get back to sexy you by 9 months. Have sex every week.

Start a 529 college fund the week baby is born. 

Put yourself first, marriage second and baby third. That should make your family unit strong.

Amy, I wish you all the best and I hope these suggestions help you to have all your dreams come true not just now but in the future.

I am sure most (fertile!) people struggle with a lot when adjusting to parenthood — trying to keep your marriage strong (or at least as good as it can be), trying to take care of your own self, doing the very best for your kids, trying to hold together your career, trying to ensure a secure financial future, blah blah blah.

But when you come to parenthood from the bumpy, winding road of infertility? Shit.

Finances. We are very fortunate — more than so, so many. While we did shell out lots and lots of money over the years for fertility treatment/drugs  (especially ‘experimental’ things like IVIG), we also managed to luck out with enough insurance coverage for the big stuff to keep us from going into debt. However, I definitely think going through infertility/recurrent miscarriage has contributed toward putting a huge crimp in my professional earning power that I’m not sure I’ll ever recover from unless I start all over with a new career (and invest in new education… no way). I put myself through so much physical/mental agony to have these children. I want to be with these children if I can. The fact that I had a really, really bad boss at my last ‘real’ job and pretty much everyone I know in advertising hates their life does not help.

I could’ve made different decisions, of course. And I guess I’m doing my best to keep my toe in the water enough as a freelancer — with hopes of staying employable in a bigger way once both my kids are older. But I definitely think a lot about the potential damage I am doing to our family by not being ‘breadwinner-capable’ enough. And the fact that I haven’t contributed to a retirement fund in years. And, um, saving for my kids’ college? Yeah…

Marriage. I also feel very fortunate to have a very loving, kind, dependable partner who does way more than many dads seem to. He’s sexy, funny and smart as hell. Yet I know  we’re not doing the best job stoking the fires of our sexytimes romantic life right now. Mostly, we have very few rare minutes alone together, period, when both kids are asleep (and one of us has not conked out putting a kid to bed). And when we do find ourselves with a teeny window of unexpected alone-time, I just want to talk. Catch up. Cuddle. Fall asleep together. I imagine my husband would like more physical sexytimes, and I feel very guilty that he’s not “getting much” these days. However, I just can’t go there physically/mentally when I feel like I’ve barely had a chance to have a quiet, pleasant moment alone together first (much less a dinner or whatever). Breastfeeding puts a tremendous damper on it all — that’s the #1 downside to me of breastfeeding (which I otherwise love), how it just makes me feel so extremely un-sexual in every way.

Not to mention, well, I’ve still got a 4-month old baby attached to me in some form 24/7. And a spazzy-pants, emotionally exhausting 4 year-old another big chunk of the time.

We will have our first post-new-baby date night soon, I hope. But it’s not easy getting there again, trusting a new babysitter and Rosemary not being very receptive to drinking from a bottle, etc.

And then, there’s how well I’m taking care of myself. I am trying! I continue to Weight-Watch, though it was not easy on a recent short vacation we took (where it rained the whole time and dining out was our only form of ‘entertainment’ and escape from the creepy, stinky house we’d rented in the woods). I would love to return to the gym… someday. I am wearing lipstick now, at least. This is a very new thing for me.

I am trying. Yet is it good enough? And why does it feel like the onus is so on me as a woman to figure so much out, hold so much together?

Anyway. I haven’t even gotten to the kids part. That’s something for a whole other post. But I do wonder how much extra pressure I feel to want things ‘perfect’ for them because of what special miracles they are? How close they were to never existing? How it seemed like I’d never-ever be a mom, and now that I am I’m like ‘oh shit, I’d better REALLY win at this prize I have been given and not fuck it up.’

And maybe, maybe, there is this teeny part inside me that feels like I don’t deserve these kids — and maybe I will ‘pay for’ our good fortune with bad fortune. Maybe it turns out IVF messes up your kid’s brain somehow, or that PGD biopsy knicked Rosemary in a way that resulted in her 3 thumbs (and who knows what else is to come?). Sometimes, when someone compliments us on how beautiful our kids are for the millionth time, I just wonder what the catch is.

Does any of this resonate with any of you?

Obviously… it is time for me to go take my medication.

The chicken or the egg?

Despite all my whining lately, I have been enjoying and appreciating our baby very, very much. She turns four months this week, and just keeps getting more squishy and adorable — I wish I could bottle her when she starts laughing like crazy with that gigantic, drooly smile. Such pure, simple joy. And the warmth and happiness of carrying her on my chest everywhere. Strangers on the subway still saying, ‘congratulations!” and gushing over her beauty.

This time lasts, like, five seconds. It is so precious. And I am so grateful to be able to experience it again. I would definitely say I’m having more fun this time than when Coleman was this age. A bit more relaxed, a bit more in the moment. Because I know the challenges ahead. I am so not in a hurry for any new milestone to come like I was last time. Maybe sitting up would be cool. But solid food, crawling — ehhh, it makes me kinda sad to think about that yet. blue

Anyway, now that I gushed about my kid a little, I can go back to selfishly dumping and sorting out the contents of my head. Thanks for indulging me, guys. I don’t know where else to do this. My life right now otherwise is kids, kids, kids (and chopping cauliflower). Which — coming from where I came — of course is an extra-special blessing. We all know that. But yeah. Just because we were somehow able to come up with a way to ‘hack’ my ovaries and uterus through science, doesn’t mean my brain is all cured now too.

I think I am finally coming to terms with just acknowledging I have a mental illness. Depression. I have struggled with it since I was a teenager. I wish I knew if it was something just baked into my personality through genetics, or was something that wormed its way into the blueprint for all my thoughts via a fucked-up childhood with a mentally-ill adoptive mother. That last part scares me so much. I can’t mess up my kids, oh my god! But I guess the difference is, my mom never-ever saw outside herself to even try to get better. She was in and out of mental hospitals for much of my childhood, but never was really treated. Maybe that was just the time — poke ’em with a Haldol shot and make ’em shut up. Maybe she was just too far gone. The combination of being a ‘secret’ housewife alcoholic, too sure didn’t help. I’ll never know. But man, do I hope I’m not like her. In any way.

This past week or so, I’ve been feeling a bit better. I still feel like I’m swatting away irritating little depression pricklies trying to get at me, but at least I am able to see the things that trigger them and kind of hold up my hand and go ‘hang on here a minute!’ before shit starts to snowball. I have hidden the statuses of pretty much everyone I know in ‘real life’ on Facebook — especially neighborhood moms. But today I was just reading about happenings at the local baby store on Facebook (owned by moms I’m kind of friendly with, but not quite ‘in’ with) and I saw my mood immediately plummet. Was that because I still have depression percolating beneath the surface? Or did seeing this and feeling all left out and not-good-enough make me become depressed?

I so want to rise above this and wade my way out of the miserable muck I make for myself. But it feels like I will be working on this forever. And I am ready to nail this shit already, you know? I try not to think about it too much, but I can really go back and think of a gazillion examples in my life where I missed out on something because I felt shitty about myself inside. Even in childhood. It breaks my heart to imagine my own kids experiencing that.

Anyway. What was my point here? I don’t know. I just wish I could be my own friend. I am trying! I have been taking decent care of myself lately. I wear lipstick many days, which is a very new thing for me. I have been taking Weight Watchers pretty seriously and am down 7 pounds so far, which makes me feel really good. But these are looks-things. Buying-things, things. Not the inner things.

But still… good things, right?

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