PDA, Parenting, & Advocating - Everyday Mama: Series

Everyday Mama: Series
This series consists of chats between Sam and "everyday mamas" sharing their unique and interesting experiences.

Today I'm joined by Regina - a mom who shares her journey of migrating to Australia, discovering her daughter is AuDHD(PDA) and her own late realisation of AuDHD. We go into what the diagnosis process was like for her daughter (and when she realised her own AuDHD) and what supports she has been able to access in the few years since diagnosis. She also shares her daughter's experiences of being a PDA AuDHDer in school and how she advocates for her - including some great tips for fellow parents in Aus.

Book mentioned: "Autism Friendly Guide to Periods"
Affiliate Link - Amazon Aus
Affiliate Link - Amazon US

Advocacy resource: Family Advocacy (AUS)

Want to share your Everyday Mama story? Get in touch: samattemptsmotherhood@gmail.com

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Disclaimer: I am not a doctor, medical professional, or mental health professional.
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Transcript

Hey friends. So my guest today is Regina. She is one of the moms that I have known via social media for a while.

 And she was someone who very quickly and I'm so thankful. Put her hand up when a while ago I put a call out for. Moms who wanted to have a bit of a chat about their situation of either being neurodivergent or parenting a neurodivergent child or in Regina case, both.

 And as a side note, if you're a mom. And you don't have to have a social media presence. But if you're her mom who wants to share your story, get in touch because I want to have a chat with you.

 As you will hear, Regina is.

Based in Australia like I am. And like I am, she is originally from America. So we have that shared experience. We have the experience of mothering half a world away from the rest of our family. And the complexities that that can add.  Throw in the pandemic. Throw in discovering your child is neurodivergent. 

And her story is one that I think is really, really interesting.

 Not to give too much away, but she has figured out over the last couple of years. That her daughter is /AuDHD. She is AuDHD and she believes that her daughter falls under the profile of PDA. Now we do address in this episode that PDA, at least in Australia is not an official diagnosis, but that doesn't mean that. Understanding what that is and approaching your child in that way. 

If you think they fall under that profile, isn't beneficial. We get into that and a lot, lot more. So let's dive in. I hope you enjoy this conversation with my friend Regina.  📍   

Obviously we're connected in that we're both Americans living in Australia,  so you guys have been here quite a while. Also, since 

she was three, so seven years now. Yeah. 

And I've just had my  10 year anniversary  here. So how did you guys originally come here?  

Yeah, I came for my job actually. So I was a product manager in the U S in a company based out of Chicago where we lived and they wanted to set up their platform in Australia and New Zealand, and they already had an office here, but they used a different tool, so they sent me to do that. 

Ah, and then that's how you've just ended up. staying long term. 

Yeah. So we really liked it. It was really nice. The pandemic was hard  because not being, not having your family, cause they used to come quite often to visit and help and everything. So I think that was really challenging to all of a sudden lose a whole support network that you thought you had.

So that was, I think really hard.  

Yeah, that's, my family hasn't come and they most likely won't, but we were going back there really regularly, like at least once a year, some years more than that. And so not being able to do that. And then also in the middle of the pandemic, I got pregnant. I had a baby,  she was 13 months old before we were allowed to go back and, go back without quarantine, because that was my biggest thing, is I was not going to be trapped in a hotel for two weeks with a however many month old baby.

Yeah, no, that  no, we were always really lucky because our parents are all like individuals and they're retired. So it was really easy for them to come and it's way cheaper for one person to fly that far as opposed to three people flying in the other direction because it is so expensive for us to go there.

I know.

I know. Yeah, so you guys moved here with work. Your daughter was three. And then you started to go down the pathway of exploring everything with her.  

Yeah. So I can say it almost seemed like quite markedly difference in her about the age of four, four and a half. She started. So I always refer to her as being a happy baby.

And she was always. The happiest baby ever, and she was always surrounded by adults she didn't have little cousins or anything to play with, none of my friends had children, so she was, like, always just with adults, so she always just got along well with adults, and in  the playground, she would just go and climb into other adults laps, because she There was no wanting to play with other kids.

She wanted to snuggle up to everybody else's parent in the playground and things,  yes, it is cute, but also terrifying that my child would just go up to somebody they don't know and just be like, hi,  hang out in their lap. So that was always a concern. But she was just, always incredibly happy and very energetic.

I used to laugh when I would take her to the playground and people would say, Oh, at least she'll like sleep well tonight. Cause they see her going around crazy. And I would just laugh because I'm like, no, she doesn't stop. Like it's this a hundred percent of the time. And I do the 

same when we're out and my daughter's being an absolute maniac and getting out in the dream.

People always comment that, Oh, she'll sleep well. And I'm like, Or they'll say something like, she'll go to bed early. And I was like we're like a minimum of nine o'clock every single night. So she is like this energy from the moment her eyes open until she literally passes out. 

Yeah, exactly. And that's the thing.

Like I used to tell people she would happily be like laying in bed, singing to herself or like talking. And then all of a sudden it would stop. And you're just Did she go to sleep or did she die? And you're like, too terrified to go in because you're like, it would be mid sentence and you're like, she's still breathing? 

Yeah,  but she would just be asleep. And that's just how she went to sleep. It 

never ceases to amaze me. I am constantly  in awe, I guess you could say, of my daughter doing that because it's the same thing. It's go. And then all of a sudden, just,  and I like jokingly equate it to like a drunk person passing out.

Yeah.  Because they're talking, they're going off on their story, and then all of a sudden they're just like,  And you're like, okay. And if I stayed there and 

I kept reading  or something, she would stay awake the whole time. I would literally just have to leave her and be like, Okay, goodnight, and just walk away, and she's just chatting. 

And I'm just like, okay.  And then you just wait patiently for the noise to stop, and you're like, Okay, I think we're safe now. Because once she's asleep, nothing can wake her. She's dead to the world. I 4th of July in the States, she would sleep through the fireworks. You just had to get her to sleep before the fireworks started.

Yeah. And as long as that happened, wouldn't wake her at all. Chaos could be happening all around her. Nothing.  

And now, is she still like that at 10?  

So we do rely a lot more on melatonin now to help her go to sleep and everything just because she can't shut her brain off. And so that was one of the first things the doctors recommended for her, but they just, when you start going to the doctor and you're like, I mentioned around four, four and a half, we noted this big difference.

And that's because she was this energetic, really happy kid. And then it was just like, something happened. And I don't know what. And it was just.  So many needs, like from her, she, it started to have these huge, at the time we called them tantrums, now I know them to be meltdowns, and it would be hours, like my child who barely had a tantrum beforehand, it would be hours.

hours of screaming and you had no idea what started it like at the time you just couldn't identify a trigger that like this was the thing that set this off and I just have to be cognizant you'd be like was she hungry was she tired was it the time of day and it just kept escalating and with those tantrums, she's losing it visibly you can see that she has no control.

She's red. She's crying. She's screaming. She's hitting. She's kicking. She's throwing things at people. She's destroying all kinds of stuff.  And we go to doctors to talk to them about this and they're like, oh, but she seems fine. She was always an early talker  early to walk. She started reading very early and could read really advanced books and could at.

18 months, we started her in child care because she could have adult conversations at 18 months. And we're like, wow, she needs more than just hanging out at home with her parents. This is more she needs.  So she was in child care from, 18 months. And then when we came to Australia, she went straight into child care as well.

And they had similar things of like, when they tried to get her to, Do some of the group activities, but she just wouldn't want to and she would hide in the book corner to read books, especially if they were doing something that was more loud, but that she really enjoyed any of the sensory kind of activities.

They had a trampoline and she would just want to jump on it. All the time, like constantly, and they're like, we can't get her to come back inside often. And, so it's like transitioning her would be really hard. And oftentimes I'd have to come collect her because she would have become really dysregulated at child care. 

And then that progressively got worse in kindergarten she would get really distracted in class and had trouble paying attention to the teacher or focusing in class, which is when we eventually got sent to a pediatric psychiatrist, and she was diagnosed with ADHD, the combined type, as well, so both hyperactive and inattentive.





I think it was a bit of both. I think my challenge was, again, I was never around people with kids. So I also have no barometer on what's normal for kids, because I don't really have friends who have kids. And, at the time, I just didn't have any friends who had children.

All my friends didn't have kids. And I was like, I don't know, to me, this is normal because this is the way she's always been because of her, like big meltdowns and tantrums. We did also, before she started school, started seeing a child psychologist. And that was predominantly psychology for me and my husband as parents.

And.  So much in terms of like positive parenting and various approaches to positive parenting and reward charts and all of those kind of things, but put structure and bounds in because clearly  me at the time, it seemed very much that they were like, you're the problem as a parent. You're parenting wrong.

You need to do these things. So we did that. And nothing changed other than, Increasingly, she became more dependent upon me. She really had this dramatic shift to I was the only person who could do things as well. And then, When she started school, the behaviors became a bit bigger, and the teachers were saying they're having trouble controlling her in class, and they recommended that we go and get her assessed.

And even the psychologist that we were seeing was like, she does have a remarkable amount of energy for a child.  And so we did get referred and. It was, within five minutes the psychiatrist was like, yes, she has ADHD like you could just see it like she's just textbook ADHD. But I think what they missed, is I tried to talk about some of the sensory challenges we had with her.

So at the time, she was very much into like tightness, she needed. So much deep input. And so this came out in, if her hair was up in like pigtails or a ponytail, it could never be tight enough. She would tighten it and start ripping out her hair because it just could not be tight enough. All of her clothes had to be almost a size too small so that they would like constrict upon her.

But she also had challenges with like wrinkles. And so the process of sitting in the car seat, sometimes. I would just have to strip her down to her underwear so that she could just sit in the car seat because the tiniest wrinkle in her clothes would set her off in the car seat, and she would unbuckle herself  while I'm driving on like a motorway, those kind of things that became really unsafe.

And. I felt like the psychiatrist at the time that we were seeing was just oh, whatever, that's just a kid thing. And didn't really listen to some of those concerns. And as we progressed through kindergarten and year one, I started knowing, noticing even more things in her social engagement with other kids.

I refer to her as the single play dater.  Because we get invited on one, and we never get invited back again. We never get phone calls because she's incredibly intense. An individual, she likes to control play, to really direct other people, and I think that comes from the anxiety part of it. So she has a lot of anxiety around unknowns, and so if she can control the play, she knows what's going to happen, and then nothing will upset her and she feels better and more comfortable. 

We also see as adults that just threads through our lives as an adult ADHD er, I know I'm a, quote unquote, control freak, because of that. Because if I'm in control, then I am having as minimal, having to deal with unknowns as possible I'm mitigating it at every spot that I can because  I am the one dictating and even I think like, in my relationship, thank God, my partner's so easygoing, but I always pick where we go to eat.

I always pick what we watch. And I think it's interesting when  knowing what we know now, you can see it applied as an adult and you might do similar things, but then looking at a child.  And seeing these type of things play out in like their world of how it can, I don't know, it can just start to make more sense, but also we see for me as a late realized, late diagnosed person. 

It's like, oh, it was always there, but here's the context that it shows up in a little person. 

Yeah, I definitely with the clothes preferences and like the wrinkles in particular, I have,  vivid memories of my struggling with those things when I was a kid. I would throw down with like socks.

I just can't with socks. And like the feel of them, the seams and the fluffiness of them. I would have to wear socks inside out if I had to wear them at all. I preferred being barefoot. I still do. Even in winter when my feet are freezing, I'm like, I don't want to wear socks.  All those things and I could see that in her so I had some initial strategies of trying to like help with that. 

But none of them ever seemed wholly effective and like reason really reasonable for her.  And with the 

ADHD diagnosis, sorry, did the psychiatrist or the psychologist that you were saying, did either of them recommend or point towards like OT or any type of support therapy? 

No, none at all. So the psychiatrist even pointedly said how her whole focus is really just on diagnosing and then managing medication, but that, the other doctors and therapists can handle anything else that she needs that's not really what her remit was so it was very transactional and that was a bit frustrating, I think, as well, because I'm just.

Like, Okay, so if I have, like, where do I go with concerns, I think was my big thing because I kept going to our GP and saying I have all these concerns, and then we'd get a psychologist and we'd go through things and we do all of that, but it wouldn't change anything, really, like nothing. It made no impact going through all of the, positive parenting approaches and various ways of filling my child's cup and making her feel valued and everything really only cemented her needing me more and almost put a wedge between her and, her dad, my husband, and then that only widened over time and is still quite a very large gap that, that, they have.

Which is a huge challenge, I think, in our house and I think, then we went into year one, and she had a really great teacher in year one, who was a much older teacher, and so she seemed to have obviously been around the block and seen lots of different kids, and she would, she was really understanding of my daughter in class, and all different kinds of strategies she would employ to help her with her attention or being able to do tasks and breaking things down for her which was really lovely.

And then the pandemic happened and she was,  then she was at home and so we had workbooks that we had to go through. That initial bit at home,  actually went quite well for her, but that's where I think I began to become horribly dysregulated. Because  I have a really demanding job and now all of a sudden I have to do my whole job at home.

And I also have to educate my child and all of the work that she has to do has to happen in the workday. And my husband had a job that required him to leave the house. So it was just me at home. Working and trying to educate her. And so I luckily worked with a really flexible group of people. So I was able to split my day and kind of two halves.

And I did a really early morning half where I worked from. I think it was 7 to 12 and then I took over with my daughter's schooling for four hours because that's when then my husband would go to work. And then when he would come back, I would go and do the rest of my work. So I worked basically.

all day, because I went straight from work to being a teacher and going through all the things that she needed to get done for school, then back to work to finish up all the things that I needed to for work in order to prepare myself for the next day to stop to eat dinner and then go get her to bed, put myself to bed to then start it all over again the next day. 

And never 

getting time to Regulate yourself or have downtime or, do any of the things that keep us from losing our 

mind. Yeah,  exactly. And then it was really hard to distinguish what was a challenge because of the pandemic, or what was a challenge because of there was something else with her. The meltdowns were still happening. Almost every single day for hours  at, hours at a time.

And so that's just like the constant thread that was happening in, in the background. Once she was able to go back to school, some things did get better, but then we moved as well because we were moving from apartment to apartment.

And that wasn't. Very good for her either. She kept getting really dysregulated every time we moved. And so we wanted to try and create a bit of certainty. So we purchased a house, but that meant that she had to move schools. And that was a whole other challenge for her. Was that change. To a different school and everything. 

And then. She started at the new school.  It was a struggle. And lockdowns. Cause that's when we had the big I think the Delta lockdown that happened that took. Like the second 

round of. Yeah, 

the really big ones. And so the school's closed and she would not do anything in her coursework at all.

She wouldn't, she didn't want to join. Yeah, she didn't want to join the calls. She didn't want to do anything on the computer. I couldn't get them to take her back at school until one day when I finally had. The teacher get on a phone call with my daughter, and  they spent three hours listening to her lose it, trying to help her calm down and then they're like yeah I think she needs to come back. 

So she was one of 10 kids at the school. But also the thing that was really hard about that is on her very first day back, it was really dysregulating for her. She mentioned or threatened to kill herself on the playground equipment and she's talking about how she wants to die and how she wants to throw herself off of something and the educators are all there listening to her, and trying to calm her because they also don't know Does she actually mean it?

Or is she just saying this? Those kind of things. And I, obviously, I get a phone call from them once they were able to calm her. And we talked about, And I think that's really important. Not only that, but then also how they think she needs. The certainty of being there every day, because we had talked about her just going maybe two days a week, just to ease the burden.

And so then she was able to go every day. 

Constantly dysregulated. Constantly overwhelmed. She would have meltdowns, not only at school, but at home, and everybody was,  I think, finally able to believe me that she was doing all of these things. And, but then it was still hard to get a doctor to Decide what we needed to do. So I was, I think we did a  study from, I can't remember if it was the University of New South Wales.

There was some child behavior clinic that we did  that also talked about positive parenting and all of these things that classified her as oppositional defiance disorder. But all the approaches that they recommended didn't work. They didn't make any impact no matter how consistently we applied any of them.

And at that point, like at this point,  did you know she was autistic? Was it suspected yet? Because with the sensory stuff,  I know the doctors weren't really like, helpful, and they were quite dismissive with that, but did you have any I 

think that's about when I started to question if she was and we did, over the course of the lockdowns, we did get another referral to a psychologist specifically for her because of the like the outburst she was having at school and talking about death and wanting to kill herself.

So we wanted to provide her a space where she could talk to somebody about how she's feeling. And so we did start going down that path and it was actually a good colleague of mine from a former job that he was struggling with some of his children and he had a pediatrician that he took his kids to and he felt like he really listened and so he referred us to his pediatrician and that's what I think really helped us because then all I had to do was get the GP to write the referral even though they were like, Not very supportive.

They're like, okay, if that's really what you want to do and simultaneously the psychologist is starting to go through the questionnaire for autism for her as well. And then we get the pediatrician appointment. And that was the first time I think I felt heard in any of this.

And he spent three and a half hours with us and it was wow.  Amazing. Just to have somebody really listen and he could even clearly see that she was ADHD. He's Yes, it's very clear that she is. And he was like, as he questioned us on things and he started to ask questions from, the autism diagnostic criteria.

That's when he was like, Oh, yes, she meets all of these things. And so that's when we finally did get the autism diagnosis.  That certainly helped with some things, but it didn't solve everything but it was incredibly validating to feel heard by someone. And to be on a path to getting additional support.

So that's where we were recommended at least to get an assessment from a speech therapist, even though her speech was actually quite excellent. It was more on the social skills find an occupational therapist continue with psychology and those things. Then we set about, applying to NDIS to get funding for some of these supports, but also just getting on wait lists because they're the wait lists are so long.

They can be almost a year long to get in to see an occupational therapist. So those are, I think the path we started on we quickly were able to get into a speech therapist and they did the assessment and really just to kind of social play focus that they wanted to do with her.

And she hated speech therapy. She hated going  twice. She ran from the building out into a busy street. And we had to like and so that's when I decided we're just going to not do speech therapy right now, because clearly she's just not in a space where she can access that we were able to get an O.

T. assessment and they didn't have any space in occupational therapy at the time, but we were able to do holiday intensives.  Every school holiday, she would participate in a week where she would get therapy every day. And it was incredible because she would, one, she would come out very tired, but she was so much more well regulated after those happened.

And then, they said, we have an occupational therapist who's coming back from maternity leave and want to know if you'd like a spot and I.

ride. I was so excited because I saw the impact OT was having on her and I like hugged the admin and I'm like crying because I'm so happy that, we finally got more consistent and reliable care for her. So that was, I think really impactful.  It was also really hard for her starting regular OT because it did start very traditional OT.

Here's the list of goals that we want to do. We want to learn to buy your shoes. We want to learn to brush our hair and like these things that, you know.  typical children her age would do, and they structured it very much we're going to do this, and then this, and like that, and she was just like, no.

No, I'm not doing that. I'm not doing this thing that you've said. She started out okay because she, I think the masking, she wanted to be compliant and follow what they said. But then as she got to know her, she was like, No. And most sessions involved her being horribly dysregulated, screaming, throwing things around the room and everything.

And that's really when I started to notice more from a PDA perspective. Cause again, we get the autism diagnosis. I go into like hyper focus research, everything I know about autism, but then also with the other behaviors. That's how I. I came across PDA and noticed that actually she sounds a lot like that. 

And so those things started to align her occupational therapist didn't know much about PDA, but went on the journey as well to learn how can I best help her if she is, let me try some things to see if. That actually helps in a session if it helps, us get a result for her and help, implement some improvements.

So she was really great because 

especially with PDA, not being an official diagnosis yet. And there is, a bit of, I guess you'd call it controversy as to. Some people think it's not a thing, some people think it is, but  either way that's so great that your OTU is willing to, one, educate and learn more, but then also, have a broad enough kind of perspective and view that even if it's not a quote unquote official diagnosis, like it could still be something that's applicable and if they can do things a little bit differently, maybe sometimes drastically differently, it's going to be better responses and you're going to get better outcomes.

Yeah. Yeah. I felt really lucky that she was so willing to try different things. And,  Learn and not just throw it all back on like me because I feel like that's what was happening at school at the time for my daughter. It was all on me to drive everything. They like what specifically did she need in class?

What other supports? How can they do these? Get her to participate in class, those kind of things. And. Me facilitating it all through my own research. So I'm having to curate things for them instead of them going and trying to find things and try things themselves.

They're waiting for me to tell them, which was incredibly frustrating through the whole process. And then just come back and be like, oh, it's not working. And I'm like, okay I can't. 

I'm not there. I don't know if you're like you tried it once and you gave up because it didn't work. Or are you like consistent or you only half doing something all of those things impact whether or not it actually makes a difference and all of that. culminated with her having massive meltdowns at school because they weren't supporting her and she was, at the time we were still figuring things out in OT of what she needed to help regulate her body and everything.

And she destroyed whole classrooms, which is really impressive for a very small at the time nine year old and she was very petite. And so she, for reference at nine, she was wearing, size seven kids clothes like she was really small and she flipped tables.

She broke a smart board by throwing something at it. Like they had escape plans in the classroom because of her behaviors in class because she would be so dysregulated and she got suspended because she was so dysregulated. And that was really hard for her. So even then in OT we just erased every single demand and focused purely on what are the things that she needs to regulate herself.

And then that's all OT was just a safe regulating space. So it's very sensory, lots of swings, lots of jumping in things deep pressure. She would, they would spray shaving foam on the ground and she'd hold on to a trapeze thing and she'd do skating in the shaving foam and she'd lie down in it and be like, totally covered in shaving foam.

You have to wipe her down afterwards and everything and bring a change of clothes, but just things to help her feel better. Yeah. School was so hard and we did a reduced timetable at school. So she didn't go every day. Which was also hard because I, at the same time, had to change my work.

So I had to work from home. I had to have a flexible schedule. I, everyone had to be aware that my daughter was struggling and that, At the drop of a hat, I would have to run to school to collect her or to help her because she was having a hard time. And I think that was one of the really hard things.

Because like, how do you explain that to someone  effectively so that they're not like, wow, that's a lot. And it's not like you're unloading on them, but you're sharing that I'm not trying to be rude or not attend something that you've scheduled because what you've scheduled is important, but.

I have this other need that has to happen.  How do you 

explain that? I personally have a Mixed relationship with the term like special needs, but I think it's a term that most people understand and most people are familiar with. So  do you, in a way and it's maybe other terms, but do you essentially have to tell coworkers that you have a high support needs child or you have a child that has You know, quote, unquote, special needs or how do you, 

yeah I'm really open and honest with my manager.

So she knows everything that's happening and then everybody else gets a tailored version of that. So I let her know predominantly because if somebody reaches out that I'm not doing something, she has all this other context for that. And she, Yeah. Is incredibly supportive of my work adjustments that I've had to make and everything with other programs.

I like to just because again, I work across many projects and in my job,  I like to let the main project leader know. So I meet with them individually. And I tell them Look, I'm really excited to work with you. I also just need you to be aware that I do have some limitations on, my ability to travel because of my daughter's needs.

And I said, so I always just say she has additional needs. She's really struggling at school at present. So I do have to work from home. I can plan to come into the office or to travel somewhere. But again, I need to plan that I can't do things last minute because I really have to set up supports for her to be able to do those kind of things.

And then, as we get more comfortable, I'll share more things about her, but I try to set that up primarily. And highlighting how, yes, I'm a parent, but I'm also a carer, and those are 2 very different things. And they take up a lot of time.  have, a lot of people I work with are parents, so they get the parent side of it, but what they don't get is the carer side.

And so trying to share that my house runs differently. We have, therapy comes home with us, but we also have to go to therapy. We have all these things that we do and I make it so that my calendar, even at work, is public. So people see when it says Therapy day and my afternoons blocked because that's when I'm taking her to therapy and those kind of things.

Because I try to be transparent in that way to hopefully help them see that I'm not just blowing them off.  

And I think too it doesn't sound like you're deliberately doing this, but you're normalizing it. Yeah. Because I just think as so my daughter's younger than yours, if I were in that situation and I were a colleague of yours and I maybe were just starting to go down this path,  it does help take, I don't like that there's stigma around it, but I do think there is still a bit of stigma around it.

And by you just being so open and matter of fact about it. It helps for everyone just to be like, okay, cool. Her kid goes to therapy or whatever that  I I'm like of the thought that I think every kid could use speech and OT just across the board.  Like, Let's help all of them learn how to regulate and everything.

But, you're helping to create a culture where that's  not a thing in that like it, it, being something that's quote unquote weird or different or, stigmatize it's just whatever. 

Yeah. And I think you know as parents I think we always aim to do better for our kids than then what we had.

And even in trying to set all these things up and make it seem like it's not. Not a taboo subject because as in meetings I go to, we always do like, how are you as a human and stuff? So being able to have a space to be open and honest, because how you are as a human impacts how you can perform that day.

And so sometimes like we all have bad days and that's totally fine, but owning it as well and not pretending like everything's great because we do. We have lives outside of work and everything. And I think people need to be aware of some of those needs as well.  And so just knowing is today the right day to have this conversation?

Or, oh they had a rough week because of something else that happened with their family. I'll move this call till when they can better focus and those kinds of things, I think can go a long way. And, As she was struggling through all of those things. That's also when I started to realize that I was autistic as well  Because I was learning so much from her OT and from you know All the things and supports I was reading lots of books about autism and I was just like, oh, that sounds like me Oh, that was what I did when I was a kid and Like I just started to piece it all together and like the way I structure my day because I love a schedule.

I timebox my calendar at work. So I'm very like regimented about how I approach everything. It all just fit and it was really easy for me to make. All kinds of tools for her from visual schedules to like writing out instructions to social stories because I was inherently already doing them myself  planning a vacation or a trip.

I look at all the airports. What are the restaurants? Where will I eat? Where will I go? What is the hotel room look like? All those things to try and build a picture for myself of what it is. And now it was just I build that picture, but I also put it into a document that I can print and share with her.

Which is funny because. Obviously, I'm autistic also and I do that and I'm like, you're saying that and I'm just like, yeah, of course, who doesn't do that? Yeah. 

Yeah. And that's the other thing too. I just thought that was normal.  And everything. So I was just like, doesn't everyone do that? And then to find out that no, they don't.

Only special people do.  

And that's I've said to you, I think in messages that.  We know my daughter's ADHD because very much like yours was when she was younger. It is so obvious.  But I am unsure about the autistic side because she's not delayed on anything. Very similar to yours, if anything, she was on the early end.

She, for most things, she fell within normal windows, but she was just on the very beginning cusp of that window for all of her things.  But I think part of what makes it not as obvious is because I accommodate her a lot, and by default it's accommodating myself. So when we're going to new places, when we're, even just whatever,  we're talking social stories.

So we're saying like, this person's going to be there, this is what it's like, blah, blah, blah. And. I know, I guess you'd say subconsciously, it's as much for me as it is for her, and I was talking to my partner recently and I'm like,  if she had a different parent, let's just hypothetical, maybe some things would be more apparent, or maybe some things would come out more, but because We do so much accommodation, just by way of how I am I'm naturally doing these things I think it makes a lot of  What could be bigger reactions or bigger things not happen because of our lives and our house is set up and everything Yeah, and it's because it's interesting.

I think a lot of people just assume that if your kids autistic You see these quote unquote telltale signs when they're like 18 months or two years old and they have a diagnosis by the time they're three and, yes, that is the pathway for a lot of people. But for many people, they don't know until their kids.

We don't know until we're adults, but like the child doesn't know until, they're into primary school, into elementary school, and you're not the only person I know that school tipped things to where everything was like, whoa, 

this is abnormal. And I've been hearing a lot, I think, from, people,  especially around the pandemic and how when we took all these kids that were struggling at school, and you put them at home, and then all of a sudden everything was great, and they also just got to be themselves.

They didn't have to conform to anything. Or mask.  Yeah. And then you. Put them back that's where the struggle is that the disparity became so great in like you can't force them back in right like  Because they've lost the ability, to mask and those kind of things which I think is incredibly apparent in my daughter and her like at school the meltdowns that she was having because she was so dysregulated and You know  From there, we realized really how high her needs really were and I think that was something that they just didn't believe in me before, because they're like, oh, but she's doing fine and this is okay.

And I was like but it's not because she comes home and she loses it. So I had to teach them about masking and those kind of things meltdowns at school all the time.  And then it's so funny, you want people just to believe you like I'm telling you the truth and then they're just so dismissive of it And then once they see it, they're like, oh, yeah, I see what you're saying.

And you're like, yeah, I've been trying to warn you if you make her feel okay, and you provide her the supports that she needs You won't ever see the meltdown because she's supported But I know that you're not doing it because of what I get when she gets home that's how I know you're not doing what you're supposed to be doing or what you say that you're doing is because she comes home and she's losing it and she just can't cope anymore.

And it's great that I'm the safe space that she can do that because she knows she can let it go. I was like,  But it's going to be painful when it happens to you. And they got to see that. And I think because of that, they've, they did a really great job of lowering demands. But in lowering demands, they basically have just let her exist in class.

So they're not actually teaching her anything. She just is.  In the classroom,  but it's really hard for them to adjust the learning material to the way that she needs it presented and to create the written instructions and the visual instructions to go with everything that they're doing, because she's in year five.

There's so much content. And so I've been told it's not a reasonable accommodation for them to do some of these things.  Yeah, hopefully the Department of Education listens to this. I'd love feedback on it. Is written instructions unreasonable for everything? I just can't 

believe that. 

Has 

your OT offered or done school visits or school meetings and stuff?

Yeah, so we've done school meetings, we've done a school visit with a list of, things that she would need that only partially get implemented. So like she gets sensory breaks, she gets movement breaks, she does have an individualized learning plan. So she also doesn't have to do as much as the class does, but because of the PDA, it's hard to know.

what she wants to do. So we can't predefine, here are your set of tasks. It's here's a whole bunch of tasks. What might you feel like engaging with? But that also means that they would have to provide the instructions for those in a way that she can consume them. And that's what's not happening at present.

They might,  So she'll put a bunch of things out to see what she's interested in, but then they'll go and ask a lot of questions about something or they'll spend too much time on something. So then she fatigues and she's I'm not doing that anymore.  She has her special interests of  jellyfish and stingrays right now are a big passion area.

And so we've tried to use that as a way of her engaging in some learning. So making it where she can research them and put together a presentation, but then. It fell over because the teacher sat down with her and was like, how do we put together a research plan? And it's 500 questions of I'm like, no, can you just let her do the thing and just show her what you want to see at the end?

Tell her go do your research.

And for them, it's really just that disconnect, like not understanding, truly understanding how to teach to her, and she wouldn't be the only kid in class yes, she might have very specific, certain things  in a classroom of what I now understand is like probably close to 30 kids in most public school classrooms.

Yep. Every kid is going to have different learning styles. And if the teachers have such a rigid idea of how things need to be done and how they're willing to present things,  you just have to think, yes, your daughter is like an extreme example, but how many other kids in that class are like  missing information and getting skipped over because they learn in a different way. 

Yeah, and I argue that written instruction, step by step written instructions, that benefits everyone. Yeah. The teacher would probably have these because they're going through the lesson plan anyway. I don't know what's so hard about that. And then, mainly taking anything that's, net new, or like really novel, and breaking that down into including visuals. 

And I think that's beneficial to everyone in a class, not just, my child in particular. Yeah, and  I would also say schools, my, my pro tip for anyone who's going through getting accommodations at school in Australia. And granted, I'm in New South Wales. Every state could be different.  Oftentimes, you'll get funding and that funding is not just for accommodations in class.

It does also cover training for the teacher. It can cover getting Support Officer or SLSO that they call them here in New South Wales, and that SLSO should not be a substitute for the teacher because that's what they've been trying to do for mine where they have them come in for the couple of hours that they're allocated for my daughter in particular, and have them manage her in class.

That's what they've been doing.  What they should be doing is using the SLSO to proctor things to the wider class so that the teacher can engage with the child on the learning instead of the SLSO. And those are things that often people miss. If you, if people reach out to family advocacy, they can provide you a bunch of information on that.

But. It's all a matter of like how things are applied in the classroom, and it should be biased towards the teacher spending time with the student that needs the help and the teacher having extra time to put together the lesson plans. And so are they able to, not have to supervise during recess so that they can make the materials that the student that needs additional support requires those kind of things.

And oftentimes. They're not keen to do that. They're very interested in throwing an SLSO at the student and having that be the thing that they do.  

And is the funding you mentioned, is that through NDIS or is that through something different? 

Yeah, so that's through school. So anytime a child has additional needs you, in  at least New South Wales, you have to apply for an access request is what it's called.

And that's where you dictate out the needs. not pleasant side of the needs that your child needs. So you'll always have to, filling out any paperwork, think about the child on the worst day possible and at the highest volume of needs that they have. And so you're dictating all of that so that then the department of education can say how much, Could we provide to that to the school to support this student?

And then they'll come back with a decision of whatever that is. I've learned that my daughter gets two hours a day and that's actually quite good compared to others. So that means two hours a day there's an SLSO in her class to support her ability to access learning. It's just that it's being applied incorrectly in that it's focusing on minding my child as opposed to allowing the teacher to engage with her directly.

And is that 

something that you can I don't want to say educate them on, but is that something that you can raise and say hey you're utilizing this incorrectly? 

Yes, I have on many occasions. So , family advocacy can provide a whole bunch of content around this.

And so I've used that directly to the school. I've copied and pasted from family advocacy saying, I need the teacher to be able to do this. These specific things with my child. Can we use the SLS? Oh, in this way and providing a link of like information around how they should be utilized and those kind of things.

I've explicitly called it out because oftentimes they won't recommend that to a parent. They. They're trying to take the easy path. Yeah, and I think that the hard thing for me is I am trying to advocate for the teacher to have time to consume the information necessary to support my child.

Yeah,  again, because of the challenging needs that she has, it definitely has resulted in, we applied to a support unit last year. Because there are very limited spaces and support units. We keep getting deferred, which is better than them saying no. So they've looked at the application.

They say yes. You qualify and you need a support unit, but there's no space for you. So you go on the list and twice a term, they look at those. And so for a year, she has been deferred and they've said, yes, you still meet the needs. No, there's nowhere we can put you.  It's important to know that's also only looking at a small subset of schools.

So it's not like they look at all of Sydney or I can't give them a list of suburbs and say, I'm willing to travel here. It's based off of your public school and the little. area that they're in. So there's a collective of schools that would have support units that she's on a list for. And only two weeks ago did they actually find a spot for her.

It's not until next year. So she is going into a support unit. It is at her current school. And we're looking at what that transition looks like, but it took a year to get a spot.  

One, that's exciting and congratulations. Thank you.  But once she's in, is she like in, or do you have to continue to go through this process of reapplying  and  

That's the fun part is because she's in year six next year.

So we're in year five right now. So she goes into year six. So yes, she has a spot. But now I'm also doing the application for high school. 

And you're already doing that? 

Yes, because you're supposed to start it in year five for high school support units because There's even less of those spaces. So her first support unit application for year seven is getting reviewed this week.

So I just finished that paperwork last week, and now we get to go through the whole process again.  

And I guess to clarify because it is different. here in Australia, but high school in Australia starts in year seven versus in the States. It might be middle school or junior high, and then high school might start more in like year nine, but here  it starts in year seven.

So you go  to primary school until six, year six or sixth grade, and then you switch to high school. So there's really only two different school kind of categories in Australia. Cause I think a lot of people, and I still, I've been here. 10 years, but still I'm like, God, like  year 7 high school. Oh my gosh.

Yeah,  it is really weird. And I think also depending on where in Australia you are, and in particular your local high school can actually be in two phases as well. So where I am, the local high school is year 7 to 10, and then 11 and 12 are at a different school. And it's considered a senior college.

Yes. And so regardless of, I think wherever she might get a spot, hopefully she gets a support unit spot in year seven. We're already looking at different schools because I cannot handle two transitions in high school, so she would not be going to her local high school anyway, because I think that's too much for her to have to go through.



 So much to think about and I think it's so hard to because  it's.  Not just learning one system. It's learning like all of these different systems and how  they interact. And, you're having to fill out so much paperwork. You're having to go through so many basically jumping through hoops. You're neurodivergent yourself.

So it's also challenging and the executive function struggles can be there. And I just think the amount of support for parents, like neurodivergent parents of neurodivergent kids is so lacking. And even when it just comes to a baseline of information of like, where do I start? 

Yeah,  it is daunting and it is really lacking.

I think, You get a diagnosis and you're like, yay, I know like how to move on from here. Like at least the steps to do next. Like you get your list of okay, I have to get on every OT's wait list. I have to find a speech therapist. I have to like, so you've got those exercises. Then you have to apply to NDIS, which is like learning a different language as well.

Because well, and now with all the 

changes they're making to the NDIS, they're making it  even harder. They're going to be doing even less funding and they're going to be I don't know if you saw this, it came out last week. They're going to be basically developing their own assessment. Yes, your child might have a diagnosis, but they are now also employing staff who probably are not therapists and not educated to be making assessments to make the final determination, if you actually can even get funding.

Yeah. It is really,  Gary almost, but I think the hard thing I've had with NDIS is again, that can't people just believe me? And I know people game the system all the time, I've been really trying to get a support worker for my daughter. And I think the hard thing in there is so many people come at you and say that's parental responsibility.

And I'm like, no, I don't think you're listening. I do care impact statements. I do like timeline of things. I had to hire a consultant to help me with putting together a request for review because I was like, I've done it once. Twice because there was the initial plan that we set up and I did a review because it wasn't enough that we were initially denied a support worker and then I hired somebody to help me put it all together.

There are, different assessments that you should actually do to submit that nobody in NDIS Or you're like,  LAC, will tell you that you should do in order to help facilitate actually getting one of those. And it's super frustrating to be like, oh, I need that too! And so having to like, go and do additional assessments, and paying for reports from professionals, too.

Help facilitate even  A glimmer of possibly getting a support worker and the way that you have to phrase things and use the right words to signify the need, and how that's different from I don't need a babysitter. I need someone to help facilitate my child learning how to exist in the world. 

She gets lost going to school. If she walks too far ahead of me while I'm walking her to school, she will miss the turn. And then I've caught her like blocks away because she's been distracted and she's just standing there because she's I don't know where I am. So teaching her the skills to be able to navigate to school.

What about in high school when she has to take a bus, or she wants to go to the shops with her friends she can't do that right now. And I work, so I also don't have the capacity to take her through some of those things at the level of support that she would need to actually learn that skill. And I think that's one of the things that's really hard, and it's only going to get harder to be able to get those kind of supports. 

And it is frustrating, like you said, because there, it's like this secret code, the secret language, when you're filling out all these forms and having to include certain assessments and  reports that aren't explicit, they're not written as far as what's needed,  but  you're expected to somehow, magically, No, to include them to be able to have a chance of it getting approved.

And then, like you said, now you're having to hire somebody. So that's a privilege to be able to  even have the funds to do that, , but it is like they are  putting as many barriers as possible to try and make it as hard as possible so that as few as people as possible are on it. And we see now what they're doing with budget cuts, 14 billion. That's a lot.

That's impacting people who genuinely need it. It's impacting their lives. And not everybody can hire a consultant to help them. And like you said, even if you do that and You tick all the boxes and do all the things they want. It's still not guaranteed. 

Yeah, exactly.  And it's so draining as well.

Because again, I'm working a full time job and I'm trying to fit in all of those assessments and all of that paperwork into a very busy week and a child that.  uses so much of my attention, especially right now, because I think as we progress through this school year, she's becoming more and more dysregulated.

So that means she needs me more and more. And so it,  she, it's like we're Velcro. She's constantly like next to me. She started sleeping in my bed more and more it's just this extra layer of demand. And so they're  There's never a break, and people are always like, Oh you should have family or whatever.

And I'm like my family that would take them 24 hours to actually get here, but also they're not able to stay long enough for them to be someone that she could be. Build the rapport and trust with to be able to be herself to where they could actually be able to help because they can come and they can visit. 

She is super dysregulated when they're here and because it's a change and so they're just not here  consistently and enough for that to be a viable option.  

Yeah, and with,  I don't want to put a black cloud, but with her age. Puberty is coming  and with puberty comes hormones and things that disrupt and make ADHD management.

Even more challenging  and I'm sure no one is like jumping to give you advice and in ways to navigate that one because we  as far as women and ADHD and hormones all are intertwined. There's so little research and information available, but even what is available, it's very much the onus is on you or on us as parents, I should say, to educate ourselves and to try and figure out  what that looks like and how the difference can  show up.

At 10, the next few years are going to have some added complexities. 

Yes.  I will say so when we did get her initial diagnosis of autism, we did stop her ADHD medication because she was having a lot of side effects and she was, as I mentioned before, very small, so she had actually fallen to I think it was like the one percentile for weight. 

So we, we did have to stop that.  Because of the PDA and her big meltdowns and just that the violence that came with them that also comes out against people which is really challenging.

We did start her on a medication to help with those meltdowns, which has been incredible. And has given her so much more capacity. So she's been able to put on weight, she'll eat more foods. She has changed from needing everything to be being really tight to everything has to be really loose.

She's,  So much more chill in so many ways. Like we still have meltdowns. They're much smaller. They're a bit easier to manage or navigate through as well as, all the capacity that she's gained from occupational therapy. But I think the medication has given her a window of tolerance where she can actually learn some skills and coping mechanisms, which was never there before.

And now we're looking at how do we layer back in some. Ritalin or, something else to help with the ADHD part of it. But thinking about hormones and all of those things that are like on our doorstep and everything, I'm like, oh, how is that going to change all the different kind of medications that she could have or needs?

And will they still be effective then? But also, how do I teacher about these kind of things because, increasing the amount of times we have to shower because body odor is amazing. And learning about periods and those kind of things. So I did buy, and I have it here, the, what is it? The Autism Friendly Guide to Periods.

And so we actually just start going through this book. I wish I had this book when I started my period.  Because I want her to. She has some friends at school who have started their periods, and so she is hearing people talk about it, and so I want her to have something she can reference to provide her with factual information about it so that it's not  Scary for her because I think she's really worried.

Like she wants to know when she's going to start and I'm like, I'm sorry, I don't know.  , 

we would all like to know when. Yeah. That's never gonna go away. 

Exactly. That would be brilliant. If they could. I would love that. But yeah, being able to answer some of those questions. I've gone through the book and I think it's incredibly helpful.

So highly recommend for anyone  looking at a guide for their children. It's really great. 

I'll find a link to it and add because I hadn't heard of that. And that  looks like an awesome. resource and also age appropriate because if that's regardless if your child's autistic or not, I think it's really hard for a lot of parents to figure out how to talk to their 9, year old about this.

Yeah. It's, I keep saying it's the only reason.  That I'm glad that my daughter has never given me any privacy in the bathroom because  it's like,  she's three and this is just an everyday conversation for us she's like, when I'm bitter, I'll get my period. And I'm like, yep, when your lot's bigger, you'll get it.

And then. Then I had to go down the rabbit hole in my head and also explaining to her of I don't wanna say then it means you can have babies. 'cause I don't want her thinking at 11 oh, you can have a baby now when, yeah, technically you can, but let's,  

that was actually a really good highlight in the book is that it, it highlighted how just because you have your period doesn't mean that you're a woman.

So it did actually explicitly say that. And I think that's really important. Piece to highlight. I think. I have other like health conditions, so I don't have a regular cycle. So it is not something my daughter, even though we have no privacy and she's like always in the bathroom  with me, it's not something she's ever seen, and so being able to have something a bit more tangible to help explain it better because it's not something that she's actually observed. 

Yeah. And that's what I think a lot of people. Like I said, I am fortunate that I do have  I don't want to say I'm fortunate. I have a cycle, but I am fortunate.

I have a cycle, but it just has created that natural flow of conversation with her. But like you said not everyone. And, imagine also, daughter who's being raised by two dads and there is just no period in the house at all. Yeah.  Exactly. That looks like such a good resource. Thank you so much. Yeah,