Tag Archives: autism

Can’t Sleep When Things Are Going Well and Caving In

$2.5M. I guess that is our current net worth, give or take, if you don’t count taxes or fees on sale of our house. I usually do but tonight I felt like giving myself a little fiscal pep talk so I threw together another spreadsheet (when I should be sleeping) which has us over the $2.5M mark. Even though that’s not real because if we sold our home and sold all our stock holdings taxes would make that a lot less. 

Still, the fact that in some not completely bullshit calculation we are at $2.5M is a significant milestone.

My husband and I picked one of those impossible net worth numbers we have/had to hit in order to consider a third child. $2.5M! That’s not going to happen, right?

Well… depends who is counting. But tonight, I’m counting it.

I’m not going to have a baby tomorrow. But given the savings goals been hit for each child ($500k, $1M, and $2.5M… if baby 3 is a possibility we’re at least at goal.) So that’s nice. None of the money feels real. And I know because I’m still rather heavy in tech stocks I’m going to regret that and it will come crashing down. I’m probably 30% in higher-risk stuff but I’m bored and antsy and FOMOing my life away so here I am holding way too. much FAANG and laughing about it until I’m crying about it. Oh well. When the game is squarely rigged against us — go big or go home? Or, stop taking risks because I’m almost old now? Probably that.

Money is a funny thing. $2.5M is a lot of money. No argument there. Yet I’m perusing the tuition rates for these fancy private schools for gifted kids and my jaw is dropping to the floor smack bang and flipping right back up into a cartoon spiral in reading that school for one kid for ONE year costs $35k or even $50k+. I mean. I don’t care how gifted your kid is. If your kids is that gifted give your kid $35k and have them build a business. Or a spaceship. Or a TikTok empire. I mean, if you are making $1M a year consistently forever then maybe $35k is a drop in the bucket but my bucket, rich as it may be, is snapping its lid on any thought of sending my son(s) to any sort of fancy private school.

I do wonder with my son… I have no idea if he’s gifted or just advanced or even how being also autistic and behind in some areas will make him who he is over the long run. I’m worried for him. Mostly in what happens when he starts to realize he doesn’t fit into the world around him. Right now he doesn’t care. At all. But I think as he matures he’ll realize that he’s different. I certainly know that feeling. My husband blossomed as the alien he is with a small group of smart-as-fuck weirdo friends. Well, maybe blossomed is the wrong word… but he survived and seemed to have fun along the way. I didn’t fare quite as well in my childhood and especially adolescent and early adult years.

And I wonder how much of what we’re capable of is based on the environment we’re put in and what we’re told we’re capable of and how we’re treated when we fail. It’s fucking strange to me to think some kids are shipped off to “gifted” programs where they walk around thinking they’re better than everyone else just because they can recognize patterns and a holographic memory (not a thing I made it up but I’ve decided it’s a thing.) I had some equally fucked up concept of my own intellect as a child based on my father’s commentary of both my smarts and my failure to live up to potential because I was clearly lazy and not trying hard enough when no no no I just couldn’t think straight and the anxiety took over very young when from an early age I felt like I was a misfit and was sad about bothering everyone while also longing so desperately to fit in and connect… but who was there to connect with? It’s not exactly all that different now.

So my son is clearly different and I want to support him while also letting him figure things out on his own. I always thought I’d be the mom who cheers my son on when he takes risks and fails but already I feel like I’m failing him on the failure support despite trying. He is already so anxious, so aware, so thoughtful in a mind that doesn’t yet understand the world or what is really going on. But he’s starting to. And I can tell as the world starts to make sense it becomes more and more scary. After a solid block of sleeping alone in his room in his bed he has been venturing out to sleep in our bed. And it’s sweet to cuddle and all but I can tell that his mind is spinning and processing all of it.

I haven’t told him my father is dead and he doesn’t know what death is yet but he certainly understands that my dad is missing out there somewhere. I don’t know what he thinks of him in his head. I worry for when my husband and my living parent’s pass away. I didn’t have to deal with grandparent death as a child except my mom’s father died when I was 8 and I guess he was always old and distant and it didn’t phase me much though I was a little sad at the thought of not knowing him well. And my great grandmother who was so old in her wheelchair through my young years – I don’t remember her dying but I remember her at some point being gone…

But because we are older parents and the ages are getting further and further apart between birth and the next birth there’s more death early on and it’s just something that is but it’s so terrible to have to experience it and to have to experience it with young kids. How on earth will I ever explain to my son when his best friend, who happens to be 78, no longer will be available to play with him ever again? My husband will be distraught and likely forever disabled emotionally by the loss of either of his parents. There are plenty of books on the subject but that doesn’t make it any easier.

And then there’s my own mortality. How did I get here? Well, covid. And my fear of getting a booster shot after the first 2 Pfizer shots seriously messed me up. I don’t know what was worse — how bad the shots messed with my body or how little doctors believed me (or how the doctors who did believe me said there was nothing they could do!) You start wondering if you’re crazy and just stuck in a placebo effect anti-panacea. Maybe your eye didn’t go blind and come back with dark floaters. Maybe you didn’t have the most intense headache like a monster clenching on your scalp and squeezing you to a pulp then stabbing you with ice picks for weeks. Maybe your hear didn’t shake like a motor and turn on and off when you were lying still at night. Maybe you haven’t had a series of experiences where your left arm and lip goes numb and you feel as if you’re possibly dying or stroking out or something.

But then you know all of that is real and you’re terrified of getting a booster shot when your body seems to be finally almost back to normal. The floaters have almost faded. You can go outside in sunlight and not cry because of your vision.

At the same time you know if you don’t get a shot you very well might die. You’re not being a hypochondriac or overdramatic. It’s just fact. You’re overweight now and that’s super high risk plus your depression is also a risk factor and you’re the blood type that seems to get hid hardest and now you’re over six months out from your last shot. Covid is an assassin out there looking for you and you can run by you can’t hide. So. I should get the shot. But then…  I don’t know. Months of feeling horrible again. Will I recover faster this time, or slower? What if I lose my vision entirely? Unlikely, but after my experience I don’t know what to think is possible anymore. And I’m so not an anti-vaxxer. I got my flu shot and I get it every year. I’ve had every shot in the book. But this really took me out. I’m scared. Of getting the shot and not getting the shot.

Meanwhile… life is being life. There’s been sickness in my house recently, a whole lot of it, but not covid. While my 3 year old seems invincible and has never had a fever (he was coughing a bit this week) my almost 1 year old was taken out by a fever up to 103.7. Poor kiddo. He’s still getting better. Slowly. And I’m trying to do my job that I’m so behind on. I managed to fight a billion fires today (a number of my own ADHD making) and I think there’s a chance I’ve caught up if I really put my head down and push through the next 3 months with tight project management kung fu fighting pow pow pow exhibitions.

But then…

My house is a mess.

My 3 year old son who is reading and memorizing the periodic table and yelling bloody murder at me if I count out of order ever and grabbing his ears should any unpleasant sound roll in or by needs support and therapies and doctors appointments and playdates and experiences and for me to be there and I’m not, I’m not there enough because even when I’m not working I’m so fucking tired or I am working because I can’t focus during the day and well it’s 2:30 now and hey I’m awake writing writing all the thoughts in my head then maybe I can sleep I guess possibly I don’ know. I want to be there for him. I want to sign him up for a thing or two but everything is expensive and yea I “have the money” but do I? I don’t know. If only I could be one of those people who just knew I’d always have a job — outside of mass layoffs — who had skills that were just employable like being a programmer or something but no I’m not that my skillset is pretty much straight up bullshit and while it’s not my first rodeo I’m still being thrown into a pit of mud and spiked in front of a crowd feigning concern. So.

And my younger son. What a personality. What a personality who needs attention and care and love and support. He is so focused and driven and will NOT GIVE UP if he puts his mind to something. I admire that in him though it makes it hard to hide anything from him because he remembers where you put it and he keeps trying to get it. We’re going to be in big trouble when he learns how to climb… he’s already starting to figure it out. I can’t believe he’s already almost 18 months (well , in 7 months) which is the beginning of when covid started with my first son and when I had the time to retreat from the world and go for walks with him that were first him sleeping while I pushed and later on more social walks for us as he counted all the numbers on the houses and shouted out letters as we walked by at 2.5.

Life goes really fucking fast. I mean they tell you it does. But you don’t know what that means until you’re in the thick of it. Here I am. Wading in quicksand and staring dewy-eyed at the sun, blinking to bat off the razor-blades of time.

And my mother needs to sell her house, hoarder house, but that’s another story. Or is it. Well it’s all my story. But who cares. I went out there and tried to help and apparently made more of a mess so she can’t handle it and she’s spending a fortune getting it cleaned up even though I got rid of so much she’s probably still saving money in the end. I can’t believe my mother is 68. Even though we have a bit of a jagged relationship I still don’t know how I can be in this world without her. Many of my friends wonder why I still talk to her. But I see her somewhat as my child as well. Not that I’m the best mother to her either. Mother to my mother. But I love her like a child, not like a mother, if that makes any sense. And if/when she dies it will likely feel like losing a child, and I’m worried about that pain, I’m worried I can’t handle more loss despite knowing loss is a gift of life because it means I’ve managed to keep on living. I’m scared of it all. I wish I could go back to the days when I knew nothing about the inevitable. I look at my sons and envy them and pity them. They can’t be kept in the dark forever. Especially with how fucked up the world is. Speaking of dark, things can get dark even faster. So much horrible things out there. I want to hide them from all of it. But they also need to know. I feel guilty for having kids sometimes. Even though grateful. Like what did I bring these innocent creatures into? Maybe they can do great things but — that’s if they survive it all. And then they still die in the end so that makes me feel pretty sick to be honest. Even if in the best case I’ll be long gone when that happens and they’ll have lived long lives and maybe had children of their own I still feel nauseous thinking about it. So I ought to stop because going down that rabbit hole is never a pretty one.

Anyway. It’s 2:39 and I need to sleep. I was probably going to write more things like about my new virtual therapist who is 83 who told me he can tell I’m highly intelligent and that I ought to be a professor and a columnist he named some columnist I reminded him of and I was supposed to know the reference but I didn’t because I don’t know much of anything but I’ll take the compliment with me to my grave or at least my mattress for now.

My Son Was Diagnosed with Autism – What’s Next?

My husband and I, both with our inability to make eye contact or socialize in a “normal” way, always thought that our children could be autistic. Our families may not be diagnosed (beyond my ADD), but between us and our parents it’s clear there’s something genetic going on in our family on both sides.

When my first son was born, he was always a bit different. I didn’t really know how different until I had my second son who at 10 months seems “neurotypical.” While it’s too early to tell with son 2, he does all the things naturally that they say a baby should do at certain ages, whereas I always had to look at my first son for a while and ask “does he do that?”

For example, my first kid was never interested in others in the room. He would always be a bit in his own world. If there was a loud noise he might turn to look in that direction for a moment, but usually he just kept staring at whatever he was staring at. He never gave much eye contact and certainly didn’t cry when his caregivers left the room. My youngest will turn to look you in the eye when you call his name and is always looking for mom. It’s just night and day between their behaviors.

Of course all kids are different so I didn’t think much of it. But between my oldest son’s heightened sensitivity to sound, his unique obsession with numbers and letters, his ridiculously good memory for a 3 year old (he has memorized all 50 capitals and is on to the country capitals, and is reading many words by sounding them out), his lack of eye contact, his outbursts, seemingly “behind” communication skills with pronoun reversal and other challenges to communicate, I thought it was worth asking my doctor if she thought we should get him screened for autism.

If COVID wasn’t a thing maybe this would have happened sooner, but his 2 year checkup was a quick in and out where the doctor didn’t really want to spend much time with any one patient. We got a new doctor and at the three year checkup she agreed he should be screened. She was kind enough to let us skip the form we were supposed to mail in and wait months to get a call to schedule the assessment and give us the immediate referral.

A month later we. had the assessment. It was all done remote but I think I trust it as the behavioral analyst who conducted the assessment (under a psychologist who joined for the observation part of the evaluation) seemed to know what she was talking about. She asked us a zillion questions and we answered them as honestly as possible. Then she observed my son play for 30 minutes by giving me instructions over headphones so he didn’t know he was being tested. She had me do things like call his name (to see if he looked at me when I did and made eye contact – he did not), point at things on the wall to see if he would turn to look at where I was pointing (he did not, he sometimes looked at my hand by never the direction I was pointing), and a bunch of other tasks like that to confirm that he was not doing the “normal” things a kid would do a this age.

After the observation, 40 minutes later, she got back on the call and told us that he has “Autism I.” There are now 3 levels of Autism and I is the most mild. Nonetheless, it opens up a world of special services and IEPs and decisions and more decisions on what to do to help him.

While I was clearly not surprised by the diagnosis, I do feel a bit overwhelmed by what’s next. I didn’t realize that autistic children can get 20+ hours a week of therapy in their homes! The type of therapy is called ABA and from what I’ve read about it, the therapy sounds pretty awful. A lot of autistic adults say it has traumatized them and I don’t think we want to pursue that route, especially given his case is mild, though I’m learning as much about it as to make the most informed decision. There is an option for 3 hours a week of parent-led ABA in home which would be done via telehealth so we’re considering that. But I think at the end of the day the question is do we think being autistic is something bad that needs to be changed or do we want to help him embrace this personality and not try to change him (but still give him support for specific areas where he can use therapy like speech and OT/PT.)

I’m leaning towards the later. Speech therapy and OT/PT could be helpful for him. I don’t know yet if I’ll be shamed by the doctor for not doing ABA or if they’re open to parent choice. The referral hasn’t even made it back to the doctor yet, so at this point we’re waiting. I’ve read too much in 48 hours online about what to do now, and it sounds like I should contact the school district for a separate evaluation to see if he qualifies for services in the district. He’s quite happy at his co-op, play-based preschool right now, so I really don’t want to to take him out of it.

Everyone says to me “oh but he’s so smart” and I have to remind them that there are a lot of kids who are smart but also have disabilities and without the right support those disabilities can prevent them from achieving what they’re capable of. At this point in my life I’m not even sure that matters so much as just making sure my son can live a happy life and support himself one day. I know what it’s like to struggle with being neurodiverse without the tools to properly handle this as an adult and it’s not fun. So I want to support him but also not make him feel like anything about him is wrong or broken or needs to be changed. I think it’s very important for him to learn and know he is fine the way he is. And everyone can work to improve themselves no matter how their mind works.

It all sounds good in theory, but how the hell do I I manage this working full time and also raising another kid? My mom was a stay at home mother and managed my sister’s challenging journey with the school system (eventually putting her in private school because in third grade she still couldn’t read) and she spent hours upon countless hours figuring out what to do, getting a lawyer to write letters to the school, doing all sorts of things that didn’t work all that well anyway. Who has time for that these days? My friend is currently navigating her school system with an advocate and she has a much more flexible job as a small business owner so she is able to invest time into that. I’m already overwhelmed thinking about how I will schedule and coordinate a small amount of therapy for my son even if we just do weekly speech and OT and PT — plus ensuring my father-in-law, his primary caregiver during the week, does all the things therapy tells us to do.

Can’t my husband do all that? Maybe. He seems somewhat onboard. He knows our son’s behavior is getting challenging. It was good for him to hear the diagnosis I think so we can be on the same page. We can work together to help him and agree that our ASD kid does have some challenges but we can get through them as we are now part of this massive community of parents with ASD kids.

I do wonder, like all parents wonder, if I did anything to cause this. They say kids born with fertility drugs are 2x more likely to have autism. No one knows why. Well, my first son was conceived with drugs to help me ovulate and my second son was conceived without any drugs. My first son also had a longer birth and had breathing issues at birth while my second son had minor breathing issues at birth but never had a lower oxygen level. Did any of these things cause my first born to have autism? How about the fact that I was so tired trying to keep my job and be pregnant that I had a bit too much Coke Zero during the pregnancy? Will they figure out that Coke Zero is causing autism? With my second son I stuck to iced tea. Did my behavior cause his autism?

And even if it did — I know so many successful and smart autistic people, I’m not sure if this is a “bad thing” at all. It just means he is different. And what child of mine would grow up not being different? Different is ok. Different is good. Being normal is boring.

But I do want him to be happy. I worry that he will be picked on in school. So far in pre-school the kids are nice (or just ignore him.) I know there are challenges ahead. Do I have the time to be the mom I want to be to support my children?

 

 

When It All Adds Up: Am I Autistic?

In the course of my mental health history, I’ve been diagnosed with, in no particular order, major depression, bipolar II, generalized anxiety, social anxiety, ADHD and, as I aged out of hyperactivity, Adult ADD. Yet my current therapist first to allude to the suspicion that I may be “on the spectrum,” so to speak. At first, I thought she was nuts. Well, I generally think she’s nuts because unlike my other therapists who have been more traditional talk therapists who don’t give direct advice, she’s more of a crossover psychologist and coach. And, maybe she actually sees something that others have missed. Or maybe she’s just crazy. Continue reading When It All Adds Up: Am I Autistic?