The Trauma Behind Being a Special Needs Parent

I am so excited to be welcoming Rach. Let's get started with you just sharing a little bit of your story and where trauma fits, in the mix of all of this.

Well, there's been many traumatic events in my life. But yeah, more so in 2014, I think it's where my story kind of really hits the big trauma peaks. I have four children in total now, and my eldest is 24. My second daughter is to my current husband and she's 17. When we hit our forties, we decided to go back for just one more and ended up with our gorgeous son who is now five and a half.

I was supposed to have a nicely planned cesarean. I'd had that with my second, I did natural birth with the first and then when the second one was breech they said, Oh, we really think you should have a cesarean.

I'm like Oh, okay and that wasn't so bad actually, I felt I could cope with it. You turn up, have all the stuff, have a baby on the day, and you go back and have lots of painkillers and then you just move through the process. Cool, I felt I could do that but that's not how it rolled with Jack.

I had a lot of pains moving up, getting up through Christmas. He wasn't due till the end of January and through Christmas, I had what looked like a contraction that lasted for like 30 minutes and some between 10 to 30 minutes. Yeah. I had to breathe through them. It was pretty significant.

I felt this wasn’t normal. Long story short, it ended up being a placenta abruption. Oh dear! But I wasn't caught out for that. After the third trip to the hospital and being sent home again, I basically got on my knees and prayed to the universe and to God and everything and went right back. Something needed to happen because I knew he needed to get out, I knew there was something wrong and nobody was listening to me because they couldn't see any major signs. I needed to do something, something had to change so they got him out.

We got back from the hospital at 1.30 am in the morning by three o'clock, my water broke and there was blood all through it. My first thought was, okay, well, they can't turn me away now.

Never mind all the blood, they can't turn me away now. Have I got enough time to have a shower? Sure.

When we got to the hospital, I told them the water was broken, and we needed to get him out but they suggested giving me an injection to see if they could stop the labour.

What? I'm not supposed to be labouring? Are you not getting the memos? Come on, let's go!

Anyway, they let me labour. And then five hours later, when they were really starting to prep me for the cesarean his heart rate dropped.

By then, my waters had already broken, but apparently, there was lots of water. They had to break the waters again to get to his head to put a monitor on. When they did, there was blood all through the waters because they didn't believe me when I came in and said there was a lot of blood, but I wasn't bleeding at the time. So they didn't go. All hands were on deck and I was in and out of contractions at this point.

I went into one and then when I came out, the room was full of people and that's when they said they needed to put the monitor on not long after, I went under another one and came out and everybody was gone.

They'd all rushed down to the theatre and left hubby and a nurse to get me in the bed, l mean with the bed all the way down to the theatre. I knew at that point I was going under a general, but they didn't know that yet. They were getting hubby into scrubs and stuff, but I know the rules here are if it's a spinal block, hubby can come in, but if it's general, he can't.

The hardest part of that for me around that time was feeling okay about it all, or maybe it was the adrenaline, but in the meantime, I mean, Hubby had seen them press the buttons to go call everybody in, and then pressed when all the blood showed up and everybody's gone then they decided we needed to get to the theatre now.

At that time, we were living in Gosford, we didn't have any family there, and we were nearly four weeks early, this was not the plan, hubby was all alone, and I knew at that point he was going to be sitting outside that theatre, and it was going to be the longest wait of his life.

He said, I was trying so hard to be a rock for you and I'm like, yes, I know, and thank you. Just trust me, we are going to be fine. I just knew we were going to be fine.

Out of everything that happened, that's probably the most traumatic part for me for some reason. Seeing him in such pain and knowing how much hell he was going through. I couldn't do anything about it. So they got me in there, got me under and brought Jax out to him saying Okay, Jax is good, he's okay but they didn't say anything about me initially.

They had to come back in and sort of keep me going or whatever was happening. Eventually, they did.

He was born at 8.40 am in the morning. Every time I came to see him, all the way through the afternoon, they just kept telling me to go back to sleep. I'd lost so much blood because everything went so pear-shaped. They needed me to recover some of that as quickly as I could.

It was borderline transfusion. So, you know, I didn't even meet him. They had to wheel my bed next to him, he had ended up in a special care nursery for three and a half days because he couldn't regulate his blood sugars and I met him for the first time that night at 8. pm.

Nearly 12 hours later!

There's a photo of both of us and we both have drips and things attached to us. He's got the little splints on his hands and he's laying on me and I'm laying in bed and both of us are like, we made it, we made it, we survived. It's kind of what it looks like.

It was hard moving on from that, there was a lot of damage that was done because I had to get him out fast from me physically and there was a lot of birth trauma. I felt like I had betrayed my body because once my waters were broken, it went hard and fast to try to get him out and then we just cut into it.

There was also this weird grief sadness, frustration and anger that came with it. You know, stopping the body from doing what it was already going to do and shortcutting that. But the physical stuff was the hardest. With my second one, I had a cesarean and at six weeks I was driving the car, I was back to normal and was chomping a bit to get out.

With Jackson, I was still sleeping in the recliner at four months down because I couldn't lay on my sides. I had a cyst that stayed in the wound until 12 months going. This, the right side's all jagged. They clearly had to get in and get him out fast because they were worried about him.

From what we can tell, he was okay. His APGAR scores were actually fine. So it didn't show any major trauma for him. And something we found out later was he had a placenta abruption that was happening behind it. So that was why they couldn't see it. There were no major alerts for them to go in any sooner. But yeah, there was definitely a lot of PTSD from that whole event which I was processing for months and months and months on top of.

Trying to feed and breastfeed him was a nightmare. I ended up with mastitis twice. He wasn't sucking properly. We didn't know that at the time, I had to give up breastfeeding when he was only four weeks old because I'd had another round of antibiotics and I'm like, I just can't give him the antibiotics and all the things, it just was so hard.

It still took me months to process some of it to some degree. So that was fine, and then when he got older, we started to notice a few things. Between six months and twelve months, you know, we noticed that he didn't really look at us, and he didn't really laugh or smile.

He did little bits here and there, but he didn't respond to his name, which is not unusual at six months, but you know, as he got older, he still wasn't responding to his name. He was fascinated with his hands and feet. And he'd do these funky little quirky things in front of his eyes. He had a lot of quirks, and as a parent, you're like, Oh, that's, well, that's different.

That's really cool. Actually, you know that's easy. It's kind of quirky, you just roll with it. Anyway, we got to 13 to 14 months and we were at a funeral with all my family there. My aunts who had spent a lot of time working with autistic children and disabilities and whatnot, picked up the signs even earlier than that, but they didn't feel like they could come out and tell me that they felt he was autistic. They got my cousin who they knew I had a good relationship with, to come and have a chat with me. To some degree, I kind of knew but after that, when we were driving home, I went and looked up all of the red flags, and he ticked every single one of them.

We had to go through the process of diagnosis, and the diagnosis came back as ASD level 3, which needs the most help, he was completely nonverbal and had a global development delay and now he's five and a half and with what we know now, he also has an intellectual delay.

He also had irritable bowel, he's had so many digestive issues over his life that have landed us in and out of the hospital.

The worst of it was having a hell year!

So, all of that trauma and then we had a hell year. We’ve just had Cory, who was not expected, but she is sometimes very neurotypical.

She hugs me and does all the things that I was looking forward to having with Jax but you know, I thought maybe this is the universal God's way of doing things. I was really looking forward to a really cuddly spontaneous and fun little child. And Jax wasn't kind of all of those things.

He was very special, but he wasn't the huggy type. He didn't like to be hugged. So I had to grieve that. And then Corey comes through and she is a hugger. She is a clinger and I felt like yeah, Right. Thanks. I see what you did there. That was from March 2019 to March 2020.

It started off when Jack got an ear infection, and I gave him some antibiotics. I've known all along, that I have to do as much natural with him as possible because he just reacts. He's had these spells where he wakes up in the middle of the night screaming in absolute agony. So we changed his diet.

He was already gluten-free, dairy-free, sugar-free, chemical-free, and fruit-free. I mean, this kid is on a very limited diet, but clean and all organic. He eats all organic. The rest of the house doesn't necessarily get to eat all organic, but he does. I knew that it wasn't a good idea, but I went against it because everybody around me was saying he was in pain and I needed to get it fixed sooner rather than later. I relented and gave him antibiotics, but I gave him three doses and after that, he was worse. Every moment instantly said, just go back to the natural protocol. So I went back to the natural protocol, beefed it up, and added a few things.

Made it a bit more potent. And then every week I would take him back to the doctors to get his ear checked to see if they were getting any better because he was still waking up in the middle of the night screaming in pain. His ears got better, It wasn't like his ears anymore. So, I said okay, well, we have to give him antibiotics, so we can start on the gut healing stuff.

We started on gut healing, we saw a paediatrician who really focuses on children that are with autism, found out what other stuff we could give him, started that, and we thought, okay, it's just going to be a matter of time. We're just going to have to ride it out until it gets better. It just didn't get better.

Hubby and I were doing a night split shift. Hubby would do the first shift and he would drive. We put him in the car, we found out that because of his sensory issues, being in the car with the seat belt was the safest place because he would bang his head so hard on everything because he was in pain you know, in the car, at least the seat is padded when he's locked in. Plus when you've got a child screaming in the house, nobody can sleep and this was happening multiple times a night. If he wasn't in pain, he would then be wide awake for hours and he makes screechy sounds, which is lovely.

I love his happy screechy sounds, but at 2 to 4 AM, you kind of get a little bit over. So if he wasn't in pain, he was wide awake. Eventually, we found something for the sleeplessness, it's magnesium. Magnesium barbs every night got rid of the being wide awake, which would mean he would go back to sleep once the pain was over. But he would sleep better sitting up.

We took turns to watch him at night with a cup of coffee. The rule was when the cup of coffee dries out, you have to tap the other person in to start the next shift. Very rarely did we get a full night's sleep because if Jax and Kerry were out driving, guaranteed Corey was awake at all angles I had them both tag teaming to keep me up, so I don't sleep as I'm the light sleeper in the house. This went on for 12 months and we just got more and more burnt out. We had a Groundhog Day when COVID hit.

For us, we thanked God for COVID-19, although it was terrible, but terrible that everything else happened for everyone else. For us, what happened was everybody was sent home to begin work from home. Hubby at the time was working in Sydney, which meant driving an hour and 45 kilometres each day.

So it’s 12 hours per day on top of getting only maybe two, or three hours of sleep. If he's super lucky they have to do a full day and then come home on the train and get straight back into the mix. It just would have been a killer. At least this way he could sleep through to 7:29, crawl out of bed, go to the computer, log on and be seen at work by 7:30, you just take whatever you can get.

We were lucky enough to have some disability funding to have someone else in the house help me with the children during the day because it was just me and if I hadn't had that help, I would have ended up in the hospital because the only way I could get some downtime was to have someone else take care of one thing or the other.

They were both so young, one and three and there was no way I could put them in daycare. I couldn't, we didn't have the funds to put them in daycare because I wasn't even able to work through this time. So just to say we were burnt out is an understatement. I don't even know what the right words are.

We were barely functioning and my body was struggling so badly that when you have something to say, words didn't come and even when it did, it was usually a singular word, I'd lose sentences. As the day wore on I was constantly needing to do this. And, you know, when you drag yourself off the couch because now, one needs a butt change and this one needs something to eat, that one needs something to drink. It's just like, da, da, da, da, da, da, da, da, da, da, da, da. Little alone at the time, all of his OT appointments, and speech appointments, then going through the process of getting her diagnosed because she ended up showing signs of not being able to speak either.

There were appointments every week, multiple of them, dragging my ass off the couch to take one to the appointment because I couldn't take the two, have someone else with the other one, come back from there, deal with the other one. So even though I had somebody else in the house, it was nonstop.

It was absolutely non-stop and then and now 17 years old who was like 15 or 16 at the time She would go to school and she'd come home and I'd be handing her a baby to go out. Can you take her? I'm just gonna go, I have to lie down, I had to. I would just close my eyes even just for half an hour I just need out so on bad days.

I would lose the ability to speak. It's like there were no words entering my mind. It wasn't just that I couldn't get my mouth to move like the information wasn't coming into my head for the mouth to move. There was nothing. And then on extreme days, I would lose the ability to understand what people were saying to me.

I'd be standing in the kitchen with tears streaming down my face because I couldn't even tell them what I needed. I didn't even know what I needed. I couldn't, and there were no words. People were talking to me and I couldn't understand what they were saying. At that point, hubby would... Go, Ed. He'd send me to bed.

He would organize for our daughter to take care of the child, and between them, they would take care of the other two. Even though they were already burnt out, I was the one falling off the edge. And that's how we had to roll with it. Whoever was literally falling off the edge. Would be the one that got to go to bed or check out for a bit.

And then everybody else would have to rally to keep the house going and the kids with what they needed in the middle of that. Corey, our littlest was having these rages. So not only were we driving Jack's multiple times at night because he was having these massive pain episodes that nobody knew what they were she was also having these rages and we've got a two-year-old meltdown. Everybody can deal with it, I've had two kids before, and I can deal with the tantrums and all of that stuff. But no, she was having an autistic meltdown on top of that. So she couldn't stand your voice, couldn't stand to be touched. Everything's turned up and it hurts. She would scream and boil over into a rage. If you could think about trying to put a feral cat into a bathtub of water, that was her. So, the second you touched her, she'd go at you. She would try to gouge my eyes out, rip my earrings out, scratch me, bite me, punch me, kick me, and do all manner of things.

She would do it to herself too, so I'd have to touch her to stop her from hurting herself, and then I would have to be the punching bag. And she would scream, like, full-on fight scream, all of that, 45 minutes straight. For normal kids, it’s two minutes, five minutes and the kids get over it, if it is more, it could be five to fifteen minutes.

It's so hard to see your little two-year-old, who is so angry and so upset that she cannot contain it, she's got absolutely no control over any of it. And it'd take me between an hour to two hours to get her to the other side of that rage. On the other side of that, she would allow me to pick her up, and then she would just crumble into my arms because she was so physically, emotionally, and mentally exhausted.

She would fall asleep, or she would just lay there and be quiet until she could get up. It got to the point where I was driving Jax, we would be in the car, 80 per cent of the 24-hour day. And if I wasn't driving Jax, I was getting Cory through a rage. And Hubby and I were not even, we were ships in the night, we were islands, both of us feeling so disconnected and so alone, yet we were both in the mix because we stopped doing the little things like where you put a hand on a shoulder or hey honey how are you going? You get into such a level of survival, it's what's the next thing I absolutely have to do and nothing more.

And what are the words I absolutely need to use to say I need help and nothing more? So please, thank you, some of that dropped away. And when you're not getting the pleases and thank you's and you're not getting the hi, how you're going or the touch on the shoulder or the hug here and there, you start to feel extremely disconnected.

Like for me, I was like, where is he? Why is he not here? What's going on with him? And not realizing that he's in the same place I am. I wasn't doing any of the things that I wanted him to do for me. Because I didn't have the capacity. I was so tapped out and so burnt out. I had so much, like, beyond nothing to give.

Other than what I absolutely had to. And he was in the exact same boat. So that's how it was for a year. Eventually, when we decided to move up here to Queensland and we switched, like, we were in and out of hospitals trying to get answers. People kept turning us away saying, wait till you see your next paediatrician appointment which would be three, six months down the track.

So it turned out that when we'd given him the antibiotics it stripped his gut. And then he was sensitive to FODMAP foods, and it was the FODMAP foods that were continuing the cycle. He literally had so much inflammation through his digestive system, this poor kid. So we took them out, and once we took them out, within three days he slept.

He slept. You know, and all the things that everybody kept telling me, Oh, well him going to the car is just a behavioural issue. Now he's gotten used to it, now it's a pattern. I'm like, no, he won't go if it's not in pain. I'm telling you, it's pain. They didn't even believe me. They said, oh, we think it's just his autism.

No, it's not. It's not fucking his autism, he is in pain. I'm telling you, it's pain. I know it's a pain. So to be not believed, you know, all of that is compounding, like compounding PTSD. Not even knowing that was a thing and eventually, we found out that for Corey, it was salicylates and amines that her body couldn't process.

And then how that shows up is this high-level sensitivity moving into complete rages. When we took all of that out, the rages stopped. So that finished a year ago and it's taken us 18 months to rebuild our relationship, to rebuild our health, to rebuild our family, to get to a place where only just now we starting to feel like we're stepping into thriving and no longer in survival.

But it has been a huge process to get from that to here.

So what would you say to a mama who is in the thick of it? Right now, what is one thing that she can do to lift herself up?

So there are there are a few things and it's not even really one thing. It's a bunch of little things that make the difference.

Because I know that in the thick of it, I didn't even have the resources to reach out. No, I didn't even have the resources to think, Oh, I should do that for myself. I'm like, if I got any moment, it was bad.

• Do whatever you have to do to survive through this part.

Know that and keep remembering it is only temporary, no matter how long it goes. It will not last like this forever. And if you can just take five minutes, even 30 seconds, where you just stop and breathe, where you relax your body and just breathe. It's these little things that take a little bit of the stress away because it's going to be thinking about this phase as it's a bit of a marathon so you ask yourself, what can you do every day that'll just help you to keep going a bit longer?

For us, we were able to organize someone to come into the home and just be with the kids. So he and I could just get out even for an hour and that was date night and that might've been an hour in three months like we didn't really didn't get much.

Even if we did, both of us just wanted to sleep and sometimes that was it. Sometimes the only thing you can do is get that time to lock yourself in your bedroom and you just shut your eyes or watch, binge-watch something for a couple of hours. Where you can just escape. While they all say it's not a good idea and you should be thinking, you know, doing all this stuff. It's like, when you've got no capacity. Any momma that's out there going through this right now, I feel for you and I just want you to know that it won't last forever. And, if you can just take any moment you can to stop and breathe, it'll be the one thing that can help you to get through.

And then you just keep going, you keep searching for the answers, you keep fighting for that child you keep knowing that there is a way through this. There is a way to make it different. That's what kept me going and I'm like this is not how my life is going to stay. What can I do? And I did it. I did it as much as I could.

• I also called in as much support as I could.

Yes. Don't be afraid to ask for help. I had best friends coming to stay with me. offering, to take the kids so I could sleep. Even at one point one of my friends who lived off the road, said, well, haven't you come stay here for a night?

So then we started implementing. I'd stay at her place for a night to just get a one-night sleep. And then, you know, a couple of nights, that's every second-week hubby would get one night where he'd go and stay at a friend's place and just drag one-night sleep. So it's thinking outside the box. How can you, if you think this is going to You almost like to have to plan like this is going to be for a long time, but keep the optimism that it's only going to be a short time.

It's only a season. It's only a season. It is only a season. And me on the other side of that, I mean, this is why we call it hell year because now everything compares to that. We've just been in hospital with my son who ended up with pneumonia. Which has its own traumas attached to it. But not a bad, not as bad as hell year.

Not as bad as hell year. So, it does get better and it does take a lot to move from the survival mode back into thriving. And it's so important and ridiculously critical that any kind of self-care you can do is good and I know that throughout that time if I'm really honest, I went without a shower for about One to two months at a time.

I would just roll out of bed and get dressed because it was my turn to drive. So then I'd be dressed and would stay dressed because then I'd get back from driving him all night, often just after dawn. And then and then I'd be into making him a coffee, and from there, I’ll switch to breakfast, and now she needs this….that's just how it rolled. So, you know, I stopped brushing my teeth, washing my hair…all of these things stopped because we were in massive survival mode. So when he started to sleep, I had to relearn or re-pattern that. So whatever the reason the survival mode is in, when it stops, you have to consciously choose to

• Start doing more self-care.

That is your time to indulge in self-care before you overload your plate. It's like, if you think about it as a pendulum, when you are so far burnt out, you've got to do so much more. Rest as much as you can to get back to some kind of normal state and it's okay to say no to people.

It's okay to say, no, I don't have the capacity to do that today. It's okay to cancel and reschedule if you need to. I've certainly learned I've had to do that. It is absolutely okay to put your needs first, wherever you can to get through this, you know, just do whatever it takes to get what you need as much as you can through this, knowing that you won't get everything you need right now. But you will. Yes. You will.

If a listener wants to connect with you further, how can they go about doing that?

I'm now a relationship coach for couples like me helping people to thrive as an individual and thrive as a couple, so they can thrive as a family. You can find me on my website, which is divinerelating.com

I've even got a relationship survival guide for couples who've got autistic or special needs kids, but really if you've got high-intensity kids or periods like this, it's kind of all the same. You can get that guide for free, plus you can get the five most powerful and potent phrases that will dissolve, resolve dissolve and de-escalate any conflict.

You can get that too for free on the website. But that's the best way to contact me, and I'd love to be able to help anybody who's trying to keep their relationship together. To get through these hard times, but build a relationship that's resilient enough to survive and get back to thriving.