Morning sickness, mohels, neuropsych evals, and more. In this episode, Mary shares her whole-ass parenting story about puking next to trash cans, pumping while DJing, finding supportive schools, and feeling things about having only one kid. Plus, in the whole-ass moment of the week—shit you shouldn’t say to parents with autistic kids.
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Music. Welcome to all up in my lady business I am your host Mary nisi on this podcast all explore the fine line between having it together I'm losing your shit here I share my journey as an entrepreneur a mom a wife a DJ and randomly a beekeeper I have no shame and no filter except the ones I use on Instagram my stories of resilience a little structure and a lot of resource Wellness can show you how to take those same things and live your life with your hole. Music. Tuning into today's episode today's episode is just going to be me laying down some sick beats not really I'll just be talking in my normal voice about things that are in my life. I am going to ask you to go to wherever you download your podcast be that apple or Stitcher and review us. Rate US say nice things about us on the internet because that is a cool way to show support for the station not for the station for this podcast we just had pledge Drive last week for for sure up and so I was I was doing you know that. Thing that you sometimes hear on public radio or you beg for money and I did it. And I was really good at it if you it actually if you still if you cannot you can still donate money to the station trip rated at work / donate now anyway so today's episode we are going to talk about my journey of becoming a parent and how it melded with my business life. And we're going to talk about when your kids surprise you with who they are. And now I became okay with giving up some control so let's get into it. Music. So I became a mother later in life comparatively speaking I am a relatively immature person. I've never really done anything on the normal timeline that usually people operate and I was I think I was 32 and I met John and he was a sprightly I want to see was 26 when we started dating oh yeah that's right. I'm a cougar that's super gross I'm not a cougar at all we just happened to have different birthdays in different years that were a couple years away from each other but you know he was younger and you know and I even though all my friends were getting married and having babies it like it I didn't really have that like biological talk clock ticking kind of thing in me I didn't have a drive to have kids immediately and we I think I was 36 when we got married and I guess when we started trying to get pregnant. We always thought there would be more time yeah well I always thought I definitely thought I was going to have more than one kid we yanked the goalie as they say about six months after we got married even though I was 36 when I got married I still feel like I've got more time let's give ourselves six months being married because I figured that I would get pregnant immediately because you know my my mom got pregnant just thinking about it and my one sister who has kids also had a relatively easy time getting pregnant so I really thought that it was just going to happen immediately and then it didn't and it really it was a shitty time like trying to get pregnant. After trying for about four months or so and it wasn't working I am listed my friend Claire Mooney she is an acupuncturist but she is probably better described as a witch and she she very much did a lot of things to me with needles and herbs and eventually it wanted happening as we all know but it took and I've sometimes make the joke that Claire money is the person who got me pregnant my husband doesn't like it when I say that but Claire definitely had a lot to do with it so I get pregnant I loved being pregnant actually I didn't like it until I made it past the first trimester I was a. I had very bad morning sickness and I found myself puking next to a lot of garbage cans I would like run to the garbage can and I wouldn't I would just make it like right in front of it and I had new empathy for those whose vomit I would find around on the street because I assumed that most puke that I saw on the street was from people who were drunk and puking because of that but now I'm realizing I bet you a lot of the puke on streets is from women with morning sickness because like when you have to puke you just you do it and. Anyway I There's a garbage can on Milwaukee that I get trick I get triggered every time I see it because I puke next that garbage can three times anyway. But anyway I sure was once I got beyond that I really loved being pregnant I really just slayed it all day I was I looked really it was a really cute pregnant person I was one of those people were like from behind you couldn't tell I was pregnant then I turn around and it was like baby surprise like it was I'm not going to lie I'm going to say it I was a cute pregnant person and I have this personal trainer. Who like I know I kept seeing I mean I exercise pretty aggressively throughout my pregnancy and I had a very I mean I felt amazing like. I wasn't drinking I was eating really well I was drinking water I was sleeping all the time I mean basically when you're pregnant you're like. You know your blood volume doubles. By your second trimester so you're basically operating at like superhuman strength and I had this personal trainer who was like super opinionated and she was like Gonna Keep Me exercising until I gave birth and in fact one time I was actually when I was like 7 months pregnant I was on. I was on I was at West session with her and I was on like a like a Precor like an elliptical machine like just. On it and there was a woman an older woman a much older woman next to me and she's like oh to be young again I wish I could exercise that hard and Tiffany was like and she's seven months pregnant and the woman left off of her bike and stopped. Actually wasn't it wasn't an elliptical was one of those gauntlets like one of those steps were it's like three steps that just go in a circle and she slept up and stopped it and she was get off of that you shouldn't be on there for seven months pregnant it's like. First of all it shows how good of a pregnant person look at even look pregnant when I was seven months pregnant just kidding I did look pregnant but she it was weird that she felt like that she could just. Make the decision for me to stop exercising because she felt like I shouldn't be doing it but anyway Tiffany what had a lot of opinions and she was an older parent as well she had her first child I want to say when she was like 37 and so. She had these kids a couple years before I started trying so she been talking about this for a long time the idea of natural childbirth in the importance of breastfeeding and like she had a lot of opinions and there's had kind of like seeped into my head and so then when I got pregnant I was like. Yeah my Burt if talking about all these things with the natural child birth and breastfeeding all the other things that I hadn't really considered at all because I was in my mind very far away from those things and so I had gotten that I bought this there's a book that came out like right around the time I got pregnant it was called expecting better and it was by this University. Of Chicago Economist her name was Emily austere and this was like my Bible for pregnancy and what it basically came down to is that she was like she was an economist she got pregnant herself and when she got pregnant her doctor gave her a list of all these things she couldn't do she couldn't have sushi she couldn't drink she couldn't you know she shouldn't have lunch meat you know all the things you're told you can't do when you get pregnant and she was like okay why and her doctor was like well you're pregnant she's like I know but other studies that show that like. Lunch meat will kill me or you know like a why I can't mean I know that alcohol doesn't seem like the right thing to do but like. Other studies that actually have shown that said unfortunately you can't. Test things on pregnant women because of you know the ethics behind it but like other countries have a lot much more relaxed attitude towards a lot of these things and so she actually went mining studies to figure out like. Can you not have sushi like can you not drink can you not and she basically what it really came down to after she did all that found all these studies and stuff was that. Really lunch meat is actually terrible for you to have in your pregnant because there's like listeria or salmonella or something that's like in lunch meat and so you should microwave it. Make sure it's hot before you eat it but that's basically it and in fact alcohol like she was like a small amount of alcohol if you metabolize it so quickly it doesn't even make it to the fetus and so. At the basically the great thing about reading that book though is that it gave me a sense of control over my pregnancy that I felt like comfortable exercising and comfortable eating what I wanted to eat and then I. I wanted to have even more control over my pregnancy because I'm like I guess I'm the kind of person he doesn't like it when things just kind of happened to me like I like to know exactly. I ask a lot of questions I don't want to go into anything not knowing what's gonna happen to me if I'm having surgery like what kind of anesthesia am I going to have like what's the recovery going to be like I mean I have any bids and ask those kind of questions but I will actually like really like watch YouTube videos of the surgery so I have an idea of like literally what's going to happen to me and when. You are pregnant your body is changing like crazy and you're growing a person inside of it and I was really excited about the activity of childbirth I remember even when I early 20s when I was like babies are gross and parenting is stupid like when I really felt very far away from it that I still would say things like I just want to like. Just ate a baby and then give birth to it because my body like that's like it when I'm like we're engineered like we're put on this Earth to like. You know procreate and make the species go on and I just I really wanted to just like give birth it seemed like a really cool powerful thing and it's the only thing that women can do that men can't do so I was like this I want to be able to like fulfill my like biological imperative and you know when you are pregnant so many things just kind of happen to you and you lose control over lot of your decisions and a lot of the things that you want to do and especially when you're involving your husband or your the partner the person you're having it with because all of a sudden you know you're the one if you're the woman and the situation or the person who's bearing the child rather you're the one who's creating and birthing and feeling and doing all that stuff but like your partner might have some opinions on this as well and one of the things so we took this so I went up taking this like eight week long natural childbirth class with John it was actually really fun we actually made some really good friends in that class and one of the things once we found out that we were having a boy. They bring up the concept of circumcision which is something that like I hadn't really thought about and I was like oh okay. So I guess if I'm given a choice here I'm gonna probably say no that seems like. I knew that it was becoming less and less of a thing and you know it seemed. A little brutal to like you know especially when I started kind of digging deep on it realizing there wasn't a whole lot of medical reasons to get it done it was mostly just a obviously a religious thing if you're Jewish but like also just like a thing that started happening and like I'm not going to go into it too deeply here but you can look into when we started doing it and why when it became kind of Deborah GE to do it for you know just the general population but in the natural childbirth class they were obviously. Suggested that we not do it in John's like no I want it I want to get him circumcised I want I want us to look like mine and I'm like what a weird concept but it's one that I heard from a lot of people so it's not like John was you know it wasn't too much of an ask I guess for him to say that because it was a thing that I've heard a lot of people say but I watched they showed us awful videos and showed us awful photographs in the childbirth class and then I watched this really this video that was it Penn and Teller or maybe it was just pain but they did like a video on circumcision for whatever it was awful and I was like I don't want to do it and John's like well I want to and I taught I actually like remember I wrote the I wrote the teacher letter I'm like he really wants to do this I don't know what to do the teacher was like. You want to wait eight days until after the baby's born to establish the best the breastfeeding relationship because once they they are circumcised a couple of things can happen one is that they're they have they're in so much pain. They basically like blackout. And they sleep for a really long time because their bodies in so much shock and so they miss a couple of feeds in that time and so that can. Mess up your boobs because of the way that you're that you're creating the milk so you want to like. Make us they're really that that becomes regular eyes so that your breasts are a are used to making the milk so if they do fall asleep you're going to have an easier time like. Maintaining your milk supply to then the other thing was that. A lot of babies will pee while they're eating and if they associate if while they're eating they're feeling the pain from the recovery of the circumcision that can also. Mess up the breastfeeding relationship so she was like. Just like the Jews wait eight days that's probably part of it is probably because of this was to like establish the breastfeeding relationship but it also. Vitamin K is the one is one of the vitamins you were born without but your body develops it over the first eight days that you're on this Earth and Vitamin K is your blood clotting vitamin so. You want to wait until the baby is eight days old so that they've got enough. Vitamin K in order to recover so I was like okay then we'll just find it so then I called the COS spittle and I was like can I bring the baby back to get him circumcised 8 days later and they like. We're like I don't know what you're talking about no it won't be covered under your insurance if you don't do it when he's still at the at the hospital. From when you would when he was delivered so I found this mohel this Jewish the person who does bris has for Jews and I found this mohel that would do circumcisions for non-jews and he comes to your house and they put your baby into this plastic mold and they strap it down and then they. Do the circumcision in the house and you know if you're not Jewish they'll still do some kind of like spiritual little. Like thing around it and I talked to this this Moyle and he was great and I was like if we're going to do this this is the mohel I want to do it so I wrote his number down a piece of paper and I handed it to John and I was like okay John. We both have kids haven't been in your I don't want to circumcise them you want to circumcise them if we're doing it this is how it's going to happen. I'm going to give you the phone number of this Moyle and this is the last four talking about it and after Sebastian's born if you still want to circumcise them you have to call them oil. You have to set it up and I will when he caught when he comes over I'm going to leave the house and I will not be here when it happens and that's how it's happening but I this is how it's going to happen it's happening eight days after he's born after have established the best breeding relationship and. You know what guys spoiler alert John never called them. Sebastian was born and it never happens so that is the story of first parenting decisions I'm sure there's a lesson in there somewhere. Okay so we he comes into this world and I took maternity leave as I mentioned earlier on it was very important to get my maternity leave and. Dina was running the business she really did a great job of keeping me out of work stuff I had to come in a couple of times to deal with things here and there but it really wasn't much I would have actually taking an extra month so I'm taking four months. Right after I gave birth to him my body was like crooked like like physically crooked and I was in a ton of pain and I want to doing a lot of physical therapy once again referencing my chronic pain when I finally get to that episode it's going to be a doozy but at any rate. I loved being on maternity leave I loved that my only job was taken care of this tiny little human and breastfeeding became like. My full-time job I was obsessed with it and luckily it worked out well I wanted to control. That element of it and I was able to get it to work and I loved it and you know I became a pumping machine when I was at work and after he would start dropping feeds because babies stopped like when you get them on a schedule they'll eventually start dropping feeds and I would stillI would still pump during that time he dropped his like for am feed and I would still get up at 4:
00 in the morning and pump because that was like the time of day when you would actually get the most milk and I banked. Like 200 ounces and we actually got a separate freezer in our basement for us to store. Breast milk in and when I finally stopped pumping and feeding him breast milk exclusively when he was at one year I had like 200 ounces of breast milk in a freezer in my basement that he would not touch. He wouldn't drink it at all I tried to hide it in smoothies in oatmeal I would try to hide it in milkshakes he would not drink it he wouldn't touch it and I wanted to actually donating it to a friend of my little sisters who a gay couple who adopted a baby and so they got. Like hundreds of ounces of my breast milk and that was as nice as it is good as it felt to like give it to somebody else that represented so so much time. An effort to get all that milk that Sebastian would not touch I've never ever ever going to let that child let that. Go anyway so I got a nanny a friend of mine my friend Susan and I we had we went through our pregnancies together and and then. Sebastian was born on January 27 and her son side was born 21 days later so Sebastian inside were like. Little Bros from the very beginning and it was really awesome to have another mom who had the same value systems and the same like way of doing things it was so wonderful to have Susan there like I'm I will always feel like I was in a trench with Susan for the rest of my life and you know in science of Ashland their little brothers and when they were doing the nanny share we would switch off weeks. So like one week to be at my house next week we get Susan and Robert so it was like we it was really wonderful there was a sense of. Consistency in you know Sebastian this I have this very tight bond to this day so I go back to work at four months postpartum and work just felt super foreign like I wasn't DJing anymore and I had given Dina all of my the booking and office stuff so like I didn't really know what my job was anymore but one of the things I did do is I had booked one wedding for that summer and it was a friend of mine who hired me when I was when I was pregnant and I her wedding was when I was in the 3 months post like it was a friend of mine from improv and. I agreed to do it. And as it was getting closer to the wedding I was like why did I agree to do this I can't DJ wedding anymore I'm a wee different person I'm a weirdo my body is not the same I'm going to have to pump during cocktail hour like I didn't know what I didn't know how to do this anymore and I was sort of panicking about it and but it was at one of my favorite venues in the city Salvatore he's I've worked there a million times so I was like okay at least it's a place I love and know and they'll be people there that I know which will make it kind of fun and part of the reason why I wanted to take this wedding is that she'd had a bit of success and she was. She was on Orange Is the New Black and I was kind of excited there might be some celebrities there and Tig Notaro was there Tig Notaro was at that wedding with her hot wife so. I did get to see it there were some added bonuses to that wedding but one of the best bonuses of that wedding was that when I walk in the door at Salvatore he's. And I was so nervous going in because I was like do you even know how to do this anymore I walked in the door and I was like this this feeling of. Utter calm and confidence rolled over me because I was like oh my God. This is the one place where I know exactly what I'm doing like when you have a when you have a baby like. Especially your first one and I mean I only have one so I don't even know if this even gets better on the second third or whatever's but like when you have a baby like you know you have no idea what the fuck you're doing ever at any point actually never changes I'm 8 years deep and I have no idea what the fuck I'm doing but you know it's like the baby farts and it sounds a little different but why does what does that fart sound differently these are Googling babies fart sounds and then all of a sudden you're convinced the baby has like something awful and so you know it's like every day and everything's babies change constantly is a just when you think you've got something down they completely change and like you have to relearn the whole thing and so the last three months had been this. Learning curve of epic proportions and so for me to roll into this wedding where it's like yep it's Salvador's I've worked here a thousand times I know where cocktail hour is I know how to do the ceremony I know where the microphone button is and over that weird plug is that doesn't really work and I'll use the other one like I walked in that room and I was like oh yeah this. I love it here I never want to leave I literally never wanted that wedding to end and and I was in control and I was and I was once again very good at it like I was like oh yeah like you know with babies every little sound they make you think they're dying like you never know what's right but in that wedding I knew exactly what I was doing and it felt amazing to be myself again I mean outside of the fact that I had to pump during cocktail hour and then once again during dinner you know I wouldn't it would have felt like any normal wedding. And I wouldn't have taken that wedding had she not been a friend of mine and so I was grateful that I had taken that wedding has it made me feel like an adult again it made me feel like a human again. So I leave that wedding and then go back to my life we have the nanny until he was. Like 18 months old and we start him in daycare this really great daycare here in Chicago called green bean and it was really weird to put him in daycare but it was great when we've made we made some really good friends and daycare like his sent his friend Roy. Love that kid. Anyway so when he was 18 months old we moved to kids into we moved into daycare a green bean and at one point maybe like a year into being there one of the teachers. Help me aside at pick up and was like he's had some weird behaviors like he's staring at the walls and you have consumed like you know some attention issues and so I was like okay well alright so they. Tell me who to have come screen and we had a therapist come and Screen him for any kind of sensory stuff and they you know and they whatever the screener did to him they were like he's fine there's nothing wrong with him and I was like great end of story never have to deal with that again so after we had him in daycare we moved him to preschool and we had them at this pretty like bougie preschool and almost immediately after he started there the teacher he this wonderful teacher there and you know all the teachers that that's cool they were all like phds and like childhood education and child psychology and like you know very advanced. You know I'll be forever grateful to that school for kind of noticing that things were going on and the school was like you need to get him a little bit more you need to get them like actually screened by like a. In a clinic so we took them to a clinic and had him screened and they were like yeah he's showing some sensory stuff he should you should have some have an OT an occupational therapist and a speech therapist push into his classroom and so we did so in the school was super accommodating and let us do it so for the all of preschool and for what they called Junior kindergarten JK we had these therapists are pushing in the other kids in the classroom were benefiting from it like they let us make this little Therapy Corner in the middle for timeouts when they needed sensory breaks and they were really accommodating and I thought things were going okay but then you know during the second during his second year in when he was in JK I would like leave every parent-teacher conference in tears. Because they were just be like I don't really know what's going on with him like he's you know he has owns out he like will stare at the walls it's hard to get him to do anything like he's you know they would like he's like he can barely speak any Spanish and he's been in Spanish since he's been here and we you know it's like we kind of want to come out of Spanish because we're he's just not benefiting from it at all like making me feel like my kid was kind of stupid and. He couldn't follow along and he wasn't participating and it was terrible I mean I literally I left he was like four and I was like leaving all the Parent-Teacher conferences in tears and he's my only child so I don't know. Like I don't have anything to compare it to and he was so little and so young and he seemed like he was normal like he was a funny weird kid but like. I'm funny and weird and John's funny and weird so like it didn't feel anything outside of the weirdness is just what John and I create and so you know it's like you want your kid to be this unique precious snowflake but then you also want them to be like the same as everybody else and be normal whatever normal means so in like February of that year the principal of the school was like we recommend that you get a neuropsych eval for him because you know we just don't know how to teach to him and if you get this neuropsych eval and he comes back with a diagnosis that we can teach to then we can like work it out but like we're such a new school we just don't know how to teach to him like he's such a challenge. And so I'm like okay fine okay whatever so I you know had to do all this work to find a. You wanted to get a neuropsych eval which takes forever they're backed up for a million years and they are expensive there bear very rarely covered by insurance and so you have to like. And it's and it's a long process like it was two full days at the clinic with Sebastian by himself without us they came to they came to his school and observed him there. John and I had to do an interview they had to come and observe him at our house it wasn't insane process to like get this neuropsych eval and then when it comes when it was ready when it was done. You know you go in and they hand you a book on your child I want to say it was like 64 pages long and we sat down and I was thinking. That it was going to be ADHD I'm like okay they're going to tell us it's ADHD and you can be medicated and I mean Max I don't want to medicate my child and like in my mind the worst thing they could say would be ADHD but then they were like so he's diet he's a he's autistic he's level two autistic and I'm like what. Autism wasn't on my radar at all and you know. When I mean anybody who has had a kid in the last 10 years like everything is engineered towards like. You know doing things to keep it from getting autistic people don't dialects vaccinate their kids to keep them from getting autistic it's seen as if autism is like the worst possible thing that it could happen to your child and you know it's like every time you go to the doctor they would be doing all these things they said were like screening screenings for autism but the thing about autism is it takes a while for it to emerge and like things that. You know are emergent that seem very heavy. You know when they're little like certain you know it's like it's a spectrum so like some things that might be you know determining you know like low functioning which is not a term you want to use but it's a unfortunately it's a it's a way of saying things people can understand but like you know they might be low functioning on one thing but high-functioning on another and those things can switch a lot of the times and so you know it's you spend a lot of time trying to. Make sure your kid doesn't have autism and then you're told when they're five that they are autistic it's like it was it was it took John and I were I mean it was it was a lot it was shocking and it was devastating mostly just because of the way that the whole world thinks about autism I thought. My little baby my perfect little child was no longer perfect and he was going to have this difficult life this heart and you know what all I could think of was like how much work it was going to be for John and I just to parent him and get him to the point of being an adult and when you say autism is going to live in my basement for the rest of his life is he gonna like I don't know you know you're you're given not a whole lot of. Positive examples of what a person on the autism spectrum can be but. As we knew at that point response Sebastian responded really well to the therapy that he was getting and in the neuropsych eval they had suggested that for kindergarten that we put him in a therapeutic. Kindergarten which is a school where the kids have to have a diagnosis and the and you know the classes are being taught it's you know it's kindergarten but is being taught by occupational therapists speech therapists social workers physical therapists dietitians like feeding specialist I mean there was like and so there was one school that everyone was trying to telling us that we had to go to and it was like 40 thousand dollars a year like it was like Harvard actually no it's probably more like U of I at this point like because college is so expensive what it how much is Harvard 60 thousand dollars a year a hundred thousand dollars a year I don't know will never be my problem or maybe it will I mean you know hashtag high hopes for my child. So the second this is the recommended putting him in the therapeutic kindergarten program and I was like okay if you guys are saying in one of the reasons why they were suggesting it was it because apparently your neuroplasticity in your brain kind of solidifies when this is the this is what they told me I'm not. An expert here but once a child turns 6 their brain basically is what it is and you can manage like but before 6 you can actually reverse or kind of retrain the neural Pathways and then after six you're basically just managing symptoms at that point and so. The idea of putting him in the therapeutic kindergarten was that it would like maybe try. You know nip some of these things and actually change the way his brain behaves to things everybody the way his response to things and it would put them on a better path towards success and so I guess maybe you might be wondering what Sebastian was doing it's kind of hard to talk about but one of the things that I was told very early on his diagnosis is that if you know a kid with autism you know one kid with autism like there's not really a whole lot of consistent things that everybody has like there's not one marker that says that a kid has autism which is very difficult because a lot of things that are autism can be totally normal and a lot of the things that seem to lie normal or Autism but with Sebastian he had like he scripted a lot like he would repeat the same things over and over again he would memorize things from TV and then you tried to help engineer entire conversations so that they were that they were like the conversation they had from like Paw Patrol he would get very obsessive about one thing and then he would abandon it and be on a new thing and it was like the first thing that the first thing never happened at all so he liked was super into Octonauts and then one day he watched an episode of Paw Patrol and then he wanted nothing to do with Octonauts ever again and it was just Papa Troll all the time one of his big things is he stems like he flaps his arms and hands and rocks his body he's really into like laying on the ground that was the thing he was doing that initially that the teacher was like he's got something going on where he would just like lay on the ground like when you get stressed out his instinct is to lay on the ground and like. He's sensory seeking like he likes crash pads and jumping on the couch and bouncing on the bed. It's not his eye contact is not great he doesn't understand like sarcasm or joking he can't stop moving you know and I also liked I would describe him as floppy like he just he would fall down all the time he like can't catch a ball to save his life like he just you know. Those are some of the things that he was presenting that showed that he had I to autism and so he starts the program and it was great for him we found this other school that wasn't forty thousand dollars a year that was that was totally covered under insurance which was wonderful and it's called Bluebird day it's in the West Loop here in Chicago was actually not too far from the school that he had been going to and so he did so well in that school he just flourished in that room like it the teachers it was it was a four to one ratio is for kids to one teacher in the classroom so like you know and the average ratio is 15 to 1 so in a regular classroom and he just he was like a leader in the school like a task you know when he was at the other school it was like you know he was sort of seen as stupid and dumb and he I think it was just sort of beat down like all the other kids were so much better than him as far as he was concerned and then at this school he got so much confidence and one of the wonderful things we got to deal is they helped us through the IEP process and IEP is an individualized education plan and they sent a social worker with us when we went to go do our IEPs so we had like a wonderful experience getting as IP IEP together for the next year and. And so the plan was for him to go to the school for a year and then he would be able to go back to that other school that we were at and we have started the process of trying to get them back in there and then the pandemic came happened came at the then the pandemic happened the shut down the school shutdowns happened and they had to get we had all had to go remote and the other school didn't have the bandwidth to try to figure out how to get them back in and we didn't know we were going to do for school because they made it clear that it wouldn't be possible to get him back into that school and the neighborhood school that we for our school is is a Spanish immersion school and they had made it really clear that foreign languages were never going to be his strong suit and so I didn't know where I was going to send her to school and you know where we've gone remote at this point like he's when he when he went remote you know toast and jam was. Just falling apart a sand couldn't work because we couldn't be in person you know schools at home we had and one of the wonderful things about the school is actually so he had he want to having remote School four times a day he had one-on-one therapies with his therapists over zoom and then they sent us a RBT which is a like a registered Behavior technician it's a type of therapist you have in these environments they sent us an R BT that came to our house every day for six hours a day. And I never saw her face it's crazy I think I'd shoot her name was Miss Alex and I never saw her face she came to her house every day for six hours during the school week to help him through school and I never saw her face I don't even know where she is now anyway we want up getting into we want of loitering into Gerda school which is another CPS school and when it happened I want of going on to the Logan Square Facebook group I Community page and I'm like hey has anybody heard of the school Gerda my son's autistic and I don't know how they deal with that stuff and like this mama mandible she's. Amazing she look at mediately piped up I was like give me her number and she called me and talk me through it she gave me the number for another mom with a kid on the Spectrum she gave me the number for a mom who. Is a is a speech therapist and she sends her kids to that school like all of a sudden I had this entire like tribe of people that were like. Rooting for us and wanted us there and those kids have all become really good friends with Sebastian's and we've had a wonderful experience at that school. I will say though like once he got out of that school like you know. It's like once you got out of bluebird and we had to all of a sudden start cobbling it all together it's basically became like a part-time job and I you know one of John's. Not strong suits is organizing that kind of stuff and finding things and doing research and so that pretty much fell on me and it became like a part-time job to just deal with. You know figuring out like occupational therapist and getting it in after school and then speech and then the his occupational therapist was noticing that he had no peripheral vision and we had wooden did like she couldn't catch balls he couldn't stand he couldn't stand on one leg and like and she said this is probably his vision and so then we found this Vision therapist who did this crazy bed a bit of testing on him and realize that you know he had like no peripheral vision which apparently is a normal thing with kids with autism but what did I know so like we had to put him in vision therapy and you know we had an ABA for a while which. Is one of the few therapies is actually covered under Insurance because it's data-driven but. It's got it all and it's engineered towards extinguishing certain behaviors so it's like you know like. You know like the flapping of his arms like they were like trying to get them to like extinguished the flapping but like the flapping is like a thing that he loves and it like helps him regulate his system and I later found out that ABA therapy was invented by the same person that invented gay conversion therapy and so we stopped doing it at that point and he hasn't gone back to a VA sense but you know it did work for certain things and it's also really good for like training certain things like. Like learning how to tie his shoes and you know use the bathroom correctly that's all stuff that can be help with ABA but I don't know what kind of left a bad taste in my mouth and he hasn't done it since. So became a part-time job just to manage all of us therapies and stuff but I will say like I'm really good at organizing them and John schedule makes it so that he's able. Facility to make it all happen so like I'm the one who lines up everything and then John gets out of work and he's able to get Sebastian from school and get him to speech therapy and OT and then we also have them lined up into other things for fun like he takes piano and swim class and. Improv class and you know so we his life is very full at this point as we now especially now that we're through the covid-19 of the whole thing he's actually able to do things. But I guess it really comes back to my desire for control like I'm trying you know it's like I'm a very controlling person I understand that I'm always trying to like catastrophize and try to figure out like what's the worst thing that could possibly happen and then. You know as long as I know the worst thing that can happen if it does happen I knew it was going to happen and if it doesn't happen I'm pleasantly surprised but it didn't and so I feel like when you become a parent your control issues are being challenged anyway you throw a child with special needs on top of that and that really it really messes with your concept of how much control you can really have on things and. You know it's like I was thinking you know I guess I thought when I have a kid that it would be 50% me and fifty percent John and it would be like half our little Souls into one little body like you know he'll like music because I do or John's like you know how like you know like making things with wood like I do or fish tanks like we found that like Sebastian he really is his own person and. You know I it's fun because like. I mean it's frustrating because it's like he has zero interest in music like the only music that he likes is the background music for any Mario. Video game like what's weird is he knows every single song from every Mario. Brothers video game like he watches these videos on YouTube unlike the like he likes the music he likes music just video game music. I mean I guess you have to take what you can get but I will say that. Like when people would say like it's so hard to be a parent but it's so awesome like I obviously didn't know what it meant because Mighty of hard things before is totally different than what it is now and it's hard it's hard in a way that I couldn't have anticipated but it's also a lot more fun than I thought it was going to be to be a parent you know like when I was growing up I was the fifth of six kids my mom had basically completely given up by the time I rolled around and she made it like such a chore to have kids and you know it's like I thought I'd have more than one and I didn't and then you know once I had that miscarriage I talked about way back in episode I think it was to you know that turns out was closed like I was I was only going to have one kid and I will say it may be other parents of one kid can chime in on this in the comment section somewhere but. I feel like I get looked at like I am less of a mom because I only have one kid or maybe I feel like I'm less of a mom because I only have one kid but when I get asked do you have kids I'll duck I have one is like I just the one and like. Yep just the one going to have more why are you asking me like. It does make me feel like maybe I'm a little bit less than a mom like a baby you know what I when people would have a second kid and they would say things on Facebook like our little family's complete. And every time I see that it got I'm not going to lie it does trigger me a little bit because I think my family feels complete until I see that and then I'm like oh shit should have had another kid like. Stupid body not. Making that better baby happen like you know I kind of have a lot of but I mean I know it's not I don't want people to stop saying that but it does it does trigger me a little. But you know there are pluses to only having one kid you know I've got less money worries traveling is easier and it makes it easier for me to have you know my my life my business. You know but there's never really a enough time for anything but if I've you know that I've learned. About parenting like the one thing is I guess the thing I've learned though is that being a parent is completely different than I thought it was going to be and it's way better than I thought it was going to be and when you're throwing the the curveball you know like your perfect little kid that seems amazing has autism you know when I learned that. I mean it was very shocking at the time but now I've learned so much more about it and I now look at his autism like it's a gift and if a genie came down and said I can remove his autism I wouldn't do it. I wouldn't let him take it because it's his little superpower and it's what makes him amazing. And definitely made me a better person it's made me have to think about parenting differently than I thought I was going to have to. For the whole last segment today we're going to talk about things you shouldn't say to a person who has an autistic kid and one of those things is is saying like. He seems so high functioning and you know the thing is that when you when you're at if you're diagnosed with autism. Like people will like if you have a kid that's diagnosed with autism they are diagnosed with autism you not thinking they look or seem are act like a kid who has autism doesn't make them less die less autistic and you know when parents sometimes seek a diagnosis of high-functioning for their autistic kid to make them distinguish from other kids who also have that and it's a false reassurance because you know like if you look at someone like Temple Grandin you know people are so she's so high functioning because she could public speak and do the things with animals and create Thunder shirts but when she was little she was considered low functioning because she was nonverbal and the real problem was that. Like you know like. Maybe a kid who you know there's a lot of kids on the Spectrum who are verbal and can do really well in school in their young with like no support or a little support but then when they get older they transfer to adulthood they you know they have a really hard time socializing and living independently so diagnosing a child with autism is high-functioning. Is is actually offensive within the content within the autistic Community because the implication is that there's other people on the Spectrum who are low functioning but that's not really that's not really a thing because where there is where they are high in something's they are low in others and so like I've had people say to me like oh you never know that Sebastian was you know has autism and it's like you might think that's a compliment but it's not like most parents of a child on the Spectrum you know. They don't they don't take that as a compliment you know it's like in the world of autism the world normal. Is usually replaced with typical or neurotypical and like sometimes it will say things to me when I say oh yeah Sebastian's got autism the be like well we're a little autistic and it's like no you're not you're not you wouldn't say we're all terminally ill because we're all gonna die one day. It minimizes the difficulties and challenges the word spectrum in terms of a medical condition means that there's a wide range of experience with in that condition not the condition is experienced across the entire human Spectrum so that's my little soapbox of things please don't ever say to me and I hope this was helpful was it I don't know but now everybody knows my kids I got autism. Thanks for listening to all up in my lady business it is written by me Mary nisi. It is produced by Christina sorum Williams and Amelia Ruby with softer. It is recorded at the toast and jam offices in Logan Square in Chicago. You can find resources and links from this episode in the show notes at all up in my lady business.com. If you enjoyed this episode and you did Smash that subscribe button and if you're the kind of person that reviews things on the internet please rate and review us wherever you listen to us it really does help people find us follow us on all of your socials and don't forget whatever you do this week do it. With your whole ass thanks for listening. Music.