Episode 3: Relationships
~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...
Lauren Fenton 00:16
This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.
Rina Teslica 00:24
I'm Rina
Lauren Fenton 00:24
and I'm Lauren.
Rina Teslica 00:25
And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and to chat about the things that we've learned and are still learning.
Lauren Fenton 00:40
Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. Don't forget, we are talking from a parent's perspective, we would never presume to talk on behalf of a disabled child or adult. So, expect bad language, and quite frankly, some brutal honesty.
Rina Teslica 00:59
Because really, what the f**k is normal anyway? Welcome to another episode of the F**king Normal podcast and in today's episode, we're talking about Relationships, in particular partner relationships. Whether you're parenting together or alone, we know that children can have a huge impact on a relationship, and especially when the child has disability. So, I want to start this episode and talk about my relationship status... I am recently engaged to be married, I've been with my partner for seven years and we have beautiful Lua who is six. Lauren, you...?
Lauren Fenton 01:48
I am married to my partner in crime and co-pilot, the lovely Patrick. We were together for around 10 years before having children. We married, then had our first daughter, Olivia, and then had Bea, who has special needs. Jesus, I am so bloody traditional- we had the whole, huge white wedding- the whole lot. And that's me. Today, we are going to be joined by our gorgeous and wonderful friend, Vicky, to talk about Relationships. Before we get into it, I want to flag that this episode contains potentially triggering themes of Domestic Violence. The names, locations and dates have been changed to protect the privacy of individuals and any resemblance to actual persons, living or dead, is purely coincidental. As I said, today, we're talking to our friend Vicky. Relationships is a broad topic, with many facets. So, we will cover this topic of relationships across various episodes, not just this one- but, as Vicky will describe, she has quite a lot to discuss on the topic. Vicky is a single mum to her four year old son, Xander. She works in strategic consultancy and I'm delighted that she's a fellow wild swimmer, too. We sometimes go swimming together. Vicky's son, Xander, has many diagnoses, including Lissencephaly- a rare, life-limiting brain malformation and uncontrolled Epilepsy, with multiple daily seizures. He is registered Blind, is nonverbal, is a wheelchair-user, and he has numerous other diagnoses, besides. I can personally testify that Xander is the sweetest little chap and most charming guy you'll ever meet. So Vicky, welcome to the podcast. Hello.
Vicky 03:47
Thank you for that lovely intro. Hi.
Lauren Fenton 03:50
I guess to start us off, and give us background, do you want to just clarify your relationship status, today?
Vicky 04:01
Sure. In the course of my child's life, I've had multiple relationship statuses, including, in no particular order; I've been married; a domestic abuse survivor; divorced; single; dating, and in a long-term relationship. I recently realised that I own many Daily Mail stigmatised labels as I'm a divorced, single mother of a disabled child- and it is surprisingly liberating. I'm really proud of us. I believe that we're doing the labels our way and I'd like to think, with a modicum of style as well.
Lauren Fenton 04:40
F**k, yes
Vicky 04:43
The point of telling you about my multiple relationship statuses is that I reckon I'm qualified to discuss Relationships on a Disabled Parenting podcast.
Lauren Fenton 04:54
Well this is why we picked you... Thanks- it's great that we've got you on here.
Vicky 05:02
It's worth saying that Xander, my son, is amazing. We are the Dream Team. As a result of living with me 90% of the time, Xander is inextricably linked with all my relationships. I wouldn't change it for the world. We live in a mellow, little love bubble.
Rina Teslica 05:22
It sounds serene and lovely.
Vicky 05:26
It is, most of the time, when there isn't epilepsy involved.
Rina Teslica 05:31
Let's not talk about that side...
Vicky 05:35
It's worth saying that my aim of sharing my abridged story is, hopefully, to give hope to other listeners on a similar journey, be that single parents, those in more unconventional setups, or those who are currently in toxic relationships, whilst caring for a disabled child. A 1/4 of women experience Domestic Violence from intimate partners and I believe that it's really important to talk about it and not sweep it under the carpet. Undoubtedly, there will be listeners in a similar boat, and, to those who are still in toxic or abusive relationships- please start listening to yourself. Listen to your gut, learn about Domestic Abuse and, eventually, seek help to get out safely, for both your and your child's sake. Sorry, I've taken it to quite a dark place... but sadly, abusive relationships will only get worse. There are amazing charities who will help you to safely escape, like they did with me, e.g. Women's Aid, Solace, Refuge, DV Helpline and local Domestic Violence services. They will believe you, they're experienced, and they will help. The number one reason why domestic abuse relationships end is due to having a child (and wanting to protect them). I'm no different and certainly, having a disabled child, I believe, may exacerbate this further. My child gave me the strength to leave- I didn't want him growing up in that environment, with fear. On a more positive note- it is so much easier to parent a profoundly disabled child without constant criticism, gaslighting, belittling mean words and actions, which just sap away at one's confidence, worth and energy. Also, honestly, single parenting is a walk in the park, in comparison. That is the irony because, when you're in a toxic relationship, you may have an abusive partner telling you that you wouldn't survive without them. Yet, the polar opposite is true... The sun shines even brighter beyond that relationship. You can relax, without constantly having to walk on eggshells, just to get through every day. However, I'm not sugarcoating the entire single parenting existence. Practically, of course, it is quite grueling, sometimes being in A& E alone, with a poorly child or dealing with teething at 5am by myself, but it was still far easier than being in a terrible relationship with someone whom I was scared off, in addition to the exhausting reality of caring for a disabled child, as wonderful as he is.
Rina Teslica 08:17
Wow, that's, it's intense. I want to go back to the Pregnancy. Can you talk us a little bit about just what your pregnancy was like? I wish it could be a bit cheerier here... However, my pregnancy was tough and lonely. I think it that it's a vulnerable time in a woman's life, anyway. The context is that I was already in a toxic relationship but, honestly, I just I hadn't fully acknowledged it. Despite the red flags, despite so many instances of unacceptable behavior, and my gut instinct, I had lost confidence in myself and I loved the partner I was with. Instead, the trajectory followed that of many abusive relationships- my long term partner's behavior actually markedly worsened during pregnancy. This is common in DV relationships. To make this easier to describe, let's call my partner Bob. Bob's previous controlling-behavior stepped up a gear, when I was pregnant- from the moment I was pregnant. This took on various forms. I believe he; Isolated me from friends and family, geographically and emotionally. He hated me even having phone calls. He had really controlling behaviors, particularly around things like my eating, because I was told I was fat and ugly, so I couldn't eat bread, which I would sneakily do on the side, anyway.
Rina Teslica 09:47
Don't we all.
Vicky 09:47
He would gaslight me about petty things, through to really serious things, like telling me I shouldn't go to A&E, when I had a suspected miscarriage, after going down stairs. I was told I was overly dramatic when, in hindsight, I was absolutely not- go to A&E.
Lauren Fenton 10:03
Oh shit.
Vicky 10:03
Financial control escalated when I was pregnant, too, which is also really common in these relationships, which one only discovers after being out of it, for example, I bought all our baby items from my own personal account and savings, whilst he was making these huge cash withdrawals from the joint account, when we had joint bills to pay, which just added to the unnecessary stress. Then, his paranoid episodes started increasing in number. He'd had a few of them before, but I always thought that maybe he was just stressed with work. I believe now, in hindsight, again, that it was ultimately about breaking down my boundaries... So, he'd have some paranoid allegation, which ultimately meant I'd have to give him my social media passwords, my email passwords and my banking passwords, to prove that I wasn't guilty of the fabricated allegation. That or weird allegations, like one about him with drugs and friends, which I was completely baffled and bamboozled by, instead focused on being pregnant and just trying to nest, with nothing to hide, so, gave all my passwords. I complied because I loved him, I trusted him and I had nothing to hide. I thought- I don't know where this has come from, but go and fill your boots. In hindsight, I may sound really naive, but I didn't even suspect that he was then accessing my phone on a regular basis. I genuinely thought that it was just me being dappy and having pregnancy-brain, when things started changing on my phone. Then, after Xander was born, videos and photos were deleted, social events were changed, like the timings were off and emails were deleted or read and, I convinced myself that I had early Alzheimer's or it was baby brain. I remember telling Bob about this, my fears and hope that my brain would return back to normal. I was worried that I wouldn't be employed in the future if I was genuinely that dappy. In short, I was pregnant, tired, worn down, and I thought I could fix it. I thought I could improve our relationship and stop the criticism and his yelling, if I just tried a little harder; and if I followed his ever-changing, incredibly controlling and meticulous rules, which would keep changing as the goalposts just kept moving. Then, increasingly, he started to scare me, too. It started in arguments, when he'd break my things, when he was angry. It tended to be things that meant something to me or was sentimental about, including a brooch from my best friend, photo frames, hair straighteners and he kicked a plug off a wall. It was my punishment- he'd say, "Look what I'd made him do". It was effective in making me scared of him, physically. Then, when he escalated to doing emergency stops with me in the car, when I was heavily pregnant- I was just so scared. So, we'd be driving along and then he'd suddenly stop the car, to roar and scream at me. And I was just petrified about the pressure of the seatbelt on my unborn child.
Vicky 12:42
Then there was a pushing down stairs incident as well, which wasn't wonderful. So, pregnancy wasn't great.
Lauren Fenton 13:13
Shit.
Rina Teslica 13:13
Gosh, I'm so sorry. It's horrible.
Lauren Fenton 13:29
Horrendous. I'm really sorry that happened.
Rina Teslica 13:33
There are no words. Whatever we say, we'll never be able to encompass everything that we feel about any woman, not just you, being in that situation with somebody and making them feel that type of way.
Vicky 13:46
It's just sad but out of it came an amazing small child.
Lauren Fenton 13:50
So how was the birth of Xander, when he came into your life?
Vicky 13:54
The birth was 50/50- absolutely terrible as we thought we'd almost lost him. He was very distressed, there was an emergency C section and he required oxygen but it was also incredible. It was the best morning of my life, to finally have him out, to know that he was alive and he survived and I'm still so incredibly grateful for the opportunity to be his mum. I fell madly in love with him, the minute I met him. I'm getting teary, just saying that. The first few months of Xander were absolutely wonderful but also exhausting like any brand new parent. I don't know if I could go back to that again.
Lauren Fenton 14:47
And how was the relationship, during that time?
Vicky 14:50
In the first few months of Xander, I was so focused on my little guy and what he needed that it was excellent single parenting preparation because I did everything, by myself, on no sleep. Xander cried a lot. The jigsaw pieces of his diagnosis were there, but I didn't know- I was a first time mum... I'd take him to the GP with unexpected issues. The GP would say I was just a first time mum but my mind would wonder about the explanations, like, the GP said he might have asthma when he's five weeks old. I remember thinking, really? It's the middle of summer, he's wheezing and has feeding issues but I guess, if you say. I also realised that my already fractured romantic relationship was now a gulf. Yet Bob, the long term partner just refused to help. He told me it was a 'woman's role' to look after my little guy single-handedly. How had we not had this conversation until, suddenly, Xander was around and needed care? Bob would just do petty things, like refusing to take photos of Xander and I together because he knew it meant a lot to me. So, I ended up repeatedly begging him to take photos of us.
Rina Teslica 15:12
Oh God.
Vicky 16:01
I'm assuming it was perhaps resentful jealousy that a new person had come into my world and was taking my attention.
Rina Teslica 16:08
Yes and it was a boy.
Vicky 16:09
Xand was absolutely wonderful, with incredible newborn hugs. So yes, the first few months were tough... I doubted myself, a lot. However, at the same time, like any new parent, I also was gaining confidence in getting to know my child. It was a wonderful dance of figuring out who he was, and him figuring out who I was, and the bond was there. I think we had quite a strong bond already but it grew much stronger, as a result. However, two months in, I realised that my relationship with Bob was properly screwed. So, me being me, thought, I'm going to give it another attempt and I'm going to do something to fix it. It was a desperate attempt to save things with Bob. So I made a stupid big gesture of gifting him tickets to Venice as a romantic break, with Xander and I, for my own birthday, which was really weird. I don't know why I thought it was a good idea. Maybe it was newborn, sleep-deprived logic, booked at 2am. Yes- this would be a great idea. It was terrible. No-one should ever go on a romantic break to Venice, with a newborn. Xander screamed a lot. He had colic. It was noisy, there was heat and stress, because it was June. Bob, the partner, behaved appallingly towards us. He acted like a moody teenager, on my birthday, and he called Xander a screaming brat, which really pissed me off.
Lauren Fenton 16:09
How old was he, at this point?
Vicky 16:27
Two months.
Rina Teslica 17:03
Two months. Ffs.
Vicky 17:22
So, after a day of teenage silent treatment, on my birthday, I politely ignored it and then, I just got fed up. We went back to the Airbnb and I asked, "Why are you being like this? I want to have open, honest communication about our relationship. Are you in it? Do you love Xander? Do you love me? Is it over?" He was then mean. He told me he was disgusted by me as I'd been so obese during pregnancy and still was, months later. I had, " let myself go". I was lucky he hadn't had an affair, and he hated every part of me.
Rina Teslica 18:30
Lovely.
Vicky 18:31
I believe that moments like that were helpful, oddly, for me. It made me think, hang on, this is my birthday. This is really upsetting for the baby too and Bob was ruining our first family holiday. I said that if he wasn't happy, let's end our relationship. Then, unexpectedly, he pushed me to the wall and put his hands around my throat. He squeezed until I couldn't breathe, and told me that, "I was so f**king entitled. He would decide when I could go". And then he paused. Then, he let go and I sort of fell to my knees as I had jelly knees. I managed to get to this strange little toilet, in the Airbnb, with this odd, little, unsafe, folding door. I locked myself in the toilet and sat in there. I had my phone in my pocket and I had this moment of clarity- a clear crystallisation in my mind that we had to get away. I wrote a note to myself, on my phone, sitting on this random loo, in this toilet. I wrote that there was no way that Xander was going to grow up in an environment where he thought that this was a 'normal' relationship. We were not safe. We needed to get out. I needed to have that moment of resolution. So, when we returned to Britain, from that point on, I started quietly confiding in my mum and close friends. However, the joy and reality of having a disabled child is there are priorities and I needed to be logical about them. My number one priority was look after our child. I knew that Xander needed to have diagnoses- he was not quite right. He needed help and he needed it urgently. I needed to get him the help, a diagnosis, treatment and then I needed to escape. I was pretty clear that it that might take a bit of time. So, in the meantime, I was just trying to keep out of Bob's way. Then, in the intervening period of trying to get a diagnosis, going backwards and forwards to doctors and pediatricians, I started viewing Bob in a different way- really noticing his patterns, and realising that, I believe, he was extremely unstable and volatile. Despite me trying to avoid him, his emotional and physical abuse was worsening, whenever I was around him. So, I just ended up staying away with Xander, in between his appointments, in Scotland, at friends' houses and my sister's house. When we were around, his surveillance became quite obsessive.
Lauren Fenton 21:26
Do you think he was feeling that you had changed in some way that you were?
Vicky 21:32
In hindsight, I think that maybe makes logical sense. I hadn't even realised. It sounds ludicrous to describe that we had a video camera in our house, which I thought was for security, for the front door. Then, it appeared in the lounge and he told me that it didn't work. I'm so bloody naive that I didn't question it but yes, it makes more sense as to why he was watching me. I spent a lot of time in the lounge, breastfeeding our small child, who was struggling to feed all the time. It was seemingly endless recording of me, without my permission. I guess I must have had phone calls with people in there, too. Maybe he did suspect.
Lauren Fenton 22:17
Calling your former self naive isn't fair. You weren't. You were in a situation where you had been controlled, gaslit you know, abused. And you had a small child- you were a new mum. You were dealing with all of the stuff that you were going through with Xander. I mean, the fact that you were so together to even logically have a list of priorities, as you just described, first I need to do this, then I need to do this- and this is my priority. In my mind, it's incredible. So, I don't know if it's useful for me to say but don't, please don't look back on your former self and say how ludicrous and naive you were because I think what you're describing is...
Rina Teslica 23:01
Incredibly strong. It's incomparable to the situations that we had, with just me being in hospital with Lua for seven months. I couldn't think of anything else but her, let alone having to deal with a multitude of very serious things going on in my life. So. I cannot imagine. I mean, I commend you to the nth degree, for being able to deal with it.
Vicky 23:28
I'm so bad with compliments, thank you. I'm struggling with them. I believe that, as a parent and especially as a parent of a disabled child, that your instinct is to just protect your small person. In a way, Xander gave me the clarity to almost zone-out some of the bullshit from Bob because none of it mattered. I had complete perspective on my baby needing me. I knew that there was something 'wrong' with his health. I hate saying there was something wrong with him, but my gut knew there was and I felt like I was trying to get the GP to listen, whilst Bob was just distracting with creepy, staged recordings. He'd sometimes come in with a weird smirk on his face, whilst watching the camera in his top pocket. Then, we'd have an odd conversation that was the polar opposite to a conversation we'd had a couple of days before, whilst he was still looking at his phone. It was apparent that I was being recorded, whilst thinking, I don't know what your game is, but I'm too busy looking after our small child to bother. What are you doing?
Rina Teslica 23:36
Did you ever point it out and ask, why are you recording me? What are you doing?
Vicky 24:49
Yes. It was in Great Ormond Street, when I asked him about it. I hadn't told him that I'd suspected, then had proof and I tried to speak to him about it, whilst safe, in hospital. And he went nuts, predictably. I believe that a person like that often reacts defensively by being offensive and making allegations back. In short, it was a precursor to his increasing Stalking behavior, over the next few years. At the time, I was still piecing the jigsaw pieces together and thought that maybe it was a one-off phase, maybe it was just an off week. Maybe he was just being paranoid. Maybe there was a plethora of excuses for why it was happening. And maybe it would just stop, which is, my general optimism about life. Yes, anyway, back to Xander... His diagnoses took over my everything. I just kept appearing at those mother-baby groups- the weigh-ins and informing them that he wasn't doing any of the baby milestones that he should, for his months. I had that damn. 'What to expect when you're expecting' book. I was told to wait, a bit longer- wait another month, yet another week. So, I then started taking him to other mother and baby weigh-ins, in different locations, wondering if I'd get a different response, which I didn't. So, five months in, I finally got a diagnosis for him by taking him to my sister's pediatrician. My family were amazing and believed me. The pediatrician spent five minutes with him and said that he thought he was blind and he had severe hypotonia. Then, I found a pediatric ophthalmologist, who was amazing. She a friend of a friend, which is weird serendipity. The ophthalmologist said that his eyes worked, but she believed that he was blind, thus, there was potentially a problem with his brain-signalling. Therefore, I had to try and push for an MRI through the local NHS hospital. This then gave me the focus to just start hounding the pediatrician's receptionist, to get that MRI booked in. So I was repeatedly on the phone, trying to persuade them to give him an MRI. Then, Xander's epilepsy took over as his seizures began. I haven't discussed the relationship there, which probably says a lot. I was just so focused on Xander.
Lauren Fenton 27:28
How was the relationship at that time and Bob?
Vicky 27:33
If I'm being kind, I think he was in denial. I think it's hard for anyone to accept that the child you have in front of you. who maybe looks quite 'normal' isn't what you wanted them to be or your expectations. But still, to this day, I do believe there's some degree of denial with him, e.g. even after we'd escaped and left, he still did the domestic violence cliche of making loads of false claims and allegations about my care of Xander which, I believe, is part of that is choosing to believe them himself? And part is just being a controlling weirdo. I'm underplaying this. He's made 481 allegations to date, over the last few years, many of which are safeguarding false claims- you name it, I've apparently done it, none of which have come to anything because they're untrue and clearly just the rantings of someone who is bitter and who lost control. Anyhoo, Xander and I escaped, and we escaped with incredible support from domestic violence charities, agencies, police, and we skipped off into the sunset. The point is for anyone listening, please learn from me. If you are in a miserable, toxic relationship with someone who's unkind and mean, and behaving in a disrespectful, abusive manner, please know that, I hate to say it, but the relationship will not get better. It worsens. There is no excuse for this behavior, you are not to blame. You just fell in love with the wrong person, who is an asshole.
Rina Teslica 29:17
Amen.
Vicky 29:19
You're stronger than you know. And you can absolutely get away from this. I promise you life is so much easier, fun, light and bright when you can just focus on your disabled child and yourself. Ideally, you'll be able to quietly plan a safe exit with help from professionals, and they will believe you. This is really important- controlling partners can become more volatile and unpredictable when they can sense that you're leaving. So please, plan it quietly with confidential, professional help. And also change your passwords, unlike me. In all seriousness, if things escalate and you're scared or you're in danger- call the police. I know I haven't met you but if this resonates, I'm wishing you so, so much strength and love. And you've got this. Next topic, please.
Lauren Fenton 30:15
Thank you, Vicky. I mean, sharing your story with so much honesty and all of that detail is obviously, incredibly hard. but to do it to support other people and to reach out to others who might be in a similar boat, just incredible, thank you. It's really important that we talk about these things, it's really important that we talk about it, in any case, but also with a mind to helping others.
Rina Teslica 30:46
So openly and honestly, it's just, I'm sure that there are listeners out there who will find this incredibly useful, and hopefully, take on some of your advice,
Vicky 30:57
Lessons, life lessons. It's a nice way of putting it. Thank you for having me.
Lauren Fenton 31:04
Well, we're not going to end it there, we have more questions...
Vicky 31:09
Intriguing... Moving on to the fairy tale that is single parenting... I sound really sarcastic saying that when I don't mean it like that. I really love single-parenting a disabled child. It's loads of fun.
Rina Teslica 31:33
Is it because you get to control everything, so it's your way or no way?
Vicky 31:37
We just have our own little groove going on. I think that when a relationship ends, quite often someone tries to remember who they were before. You have this new role in life. And likewise, when you have a child, you have a new role in life because you are suddenly a mother or father or having to care for this small person. And so, having those two things combined, with my favorite little person in the whole wide world, was incredibly fun and silly, figuring it out together and figuring out our little routine. I'm so incredibly grateful to have my partner in crime as my son. It's great. There's nothing I like more than, we live on top of a hill, so being in the car together, he's in the front seat because he has uncontrolled epilepsy- there are perks to this. So, we'll fly down that hill together and I just feel so exhilarated and alive each day. Seeing him next to me as my little copilot, in the car. It's absolutely wonderful. This is what life's about.
Lauren Fenton 31:43
What an image
Rina Teslica 32:22
I can just imagine.
Lauren Fenton 32:37
And does he love it?
Rina Teslica 32:39
Giggling, all the way.
Vicky 32:42
My car has really irritating beeps when it reverses, and he finds them hilarious, so I can't switch them off now. Yes, he loves it and cruising around London.
Lauren Fenton 33:02
It's interesting, what you say about actually you change and shift, and your focus changes, when you have a child. We all know that. And I guess with disability or SEN children in the mix, it can be more profound. Listening to your story, and not at all trying to compare it, but I've definitely changed a lot. I'm a completely different person, now, 10 years since I married my husband, and the empathy, the kind of perspective that having a kid with a disability brings- is bound to have a profound impact on you. I think I'm really lucky that, with Patrick, obviously, it's changed him too. And I think, fortunately, we've kind of changed in a similar way and, if anything, it's kind of brought us closer together and tightened that bond.
Vicky 33:53
That's beautiful
Lauren Fenton 33:54
I'm not pretending that it's all perfect. Relationships aren't.
Vicky 33:57
Doing that together is incredible. It's testament to who you both are as people.
Lauren Fenton 34:05
Well, I think it's a bit of luck as well, because I think it's about how you see the world. You know, and if you have similar views around the same kind of things, like therapy and education and interventions- that definitely helps because, as you know, there are so many decisions to make all the time. So yeah, I'm not pretending we've got the perfect marriage. I don't think such a thing exists. There are always challenges in any relationship, but definitely we feel stronger than ever, in a way, but I am desperate to hear about dating and how it is. Not that I'm in need of some tittle tattle. But....I haven't used the term 'tittle tattle' for a long time, but yes- being a single mum on the dating journey- how was that?
Vicky 35:04
I mean, what can I say? Just sexy, having a disabled child. I'm being really sarcastic.. No, I think, as with anything, it's really important just to work on yourself first- be happy and content in who you are, and then, just don't have any pressure initially and speak your truth. I told everyone about my son obviously and about his disabilities, but on a first date- I probably wouldn't give the whole diagnosis story- it's a tad heavy. Fair enough, it's going to freak people out. It would freak me out if I was on a first date, although I'm probably quite hard to shock. For me, having a disabled child has actually been really helpful for teaching me how to set boundaries because I know what his boundaries are. I'm very clear on what his needs are. And as a result, he gave me lessons on what is and isn't important in a relationship and
Lauren Fenton 36:03
It's perspective again, isn't it?
Vicky 36:05
Dating has been kind of hilarious- maybe because I didn't care as much about the romance than maybe I would have when I was a teenager- when that romantic relationship was everything. Rather, I went in, already feeling like a whole person already, thank you. I've got me and my son- We don't need anyone else but if I happen to meet someone nice, along the way. Great, cool. And that really does help to have that sense of humor when sometimes you had bad dates. I mean, this is just no secret. There are some weirdos out there. And I mean, weirdos in the weirdest possible way.
Lauren Fenton 36:44
Tell us a bad example, just to give us perspective
Vicky 36:46
One of the worst ever dates was a chap who looked quite normal. So, he was on Hinge and he had a profile picture of a dog. I thought that equals empathetic, nice human. Right, which would be what I would think. He had some good chat, initially and I thought I'd sifted out the nutty ones We went to go and see a young astronomy photography exhibition, which was quite exciting, because I really wanted to go, yet he didn't seem to want to go, but I thought it was about paying. So, I paid. We wandered around it and he kept saying, "This is all a lie- the Big Bang, Astronomy- It's just a lie". I clarified, "When you say it's a lie, astronomy is a lie? What?" He said. "Yeah, I mean, this is just utter nonsense. Do you think any of this is true? The stars are true? This black hole is true?" I said, " Well, yes, I do believe in the fundamentals of physics". And then, it just got weirder. He was mega-right wing, which is... each to their own. However, his views were racist and I called him on it. I was told I was a white apologist and not to worry, as he knew karate and worked with the home office, so would protect us
Lauren Fenton 38:05
He worked for the home office? That's the scariest thing of all.
Rina Teslica 38:08
You shouldn't be a racist in that role.
Vicky 38:10
Why on Earth and how was he in that job?
Lauren Fenton 38:12
Oh my God.
Vicky 38:15
Needless to say, I decided in the first five minutes, that he's never getting anywhere near my baby but said, "I'm sure you're a really nice person. However, your views on life are so very different to mine that we were never going to fit." He said, "What do you mean? I think we're getting on really well" I said, " I think you're massively right-wing and I'm not. Now I'm about to go and watch the Eurovision Song Contest with my wonderfully gay friend tonight, knowing that he was also homophobic, obviously. He said. "No, I don't think I am at all". Oh, well. Good luck with life then- byeee. So he was my worst date because I found his own views so distinctly different to mine. I mean, God knows what his views would have been on Eugenics. I do believe that as a parent of a child with special needs, you are given this wonderful gift of having a really wonderful bullshit-ometer. Or you just don't suffer fools gladly as, maybe you would have, if you weren't in this situation, because you're so used to- I want to say fighting for your child, but having perspective in life about what's important and what's not. And so, when you're on a date with someone, you can immediately see if it's all about them and their ego or there's no empathy or they're not inherently a kind person or for whatever reason, they're dealing with their own trauma, because, quite frankly, I just don't have time for because I've got my own little disabled monster who will give me dramas on a regular basis. I don't need someone else's crap
Rina Teslica 39:51
Or Mummy and Daddy issues.
Vicky 39:53
It's that's really liberating, to realise that, and who knew that the silver lining of having a disabled child is that it helps you to quickly sift through who is worthy and who isn't worthy to be near me and then, eventually, to be near him too.
Rina Teslica 40:10
I have a question actually that's quite interesting. Have you ever introduced Xander to somebody and he, because I feel like our kids are so much more in tune with like the vibe of a person, like Lua will only go to- she can kind of sift through those who are not very nice and she will ignore and be very cautious. And then to people who are really kind, she will walk over and hold your hand and...
Lauren Fenton 40:39
She held my hand the other day! I'm loving that! Did you just say that for me?
Rina Teslica 40:39
You are Lua-approved, But she's done this so often and sometimes, for example, like even with doctors, and ,you know, she can be very.. she's so social but yeah, has Xander ever not liked somebody that you've introduced him to?
Vicky 40:59
All the time. I think you have a really great point there. My child is nonverbal and his ability to sense someone's inherent goodness is...he's wonderful at it. There are some people that he just does not like and he's such a mellow little guy that I'll politely laugh over it, whilst clocking that my child doesn't like you
Rina Teslica 41:23
So won't see you again.
Vicky 41:25
I mean, clearly you'll be more diplomatic in the way that it's said.
Rina Teslica 41:27
Of course.
Vicky 41:27
"It's not you, it's me, the timing is wrong". Whatever the excuse is- my child doesn't like you, so quite frankly, no- you'll never come through my door ever again.
Rina Teslica 41:38
What's he done?
Lauren Fenton 41:39
What a filter.
Vicky 41:40
He just screamed and cried, when I came home once, and was with a babysitter. That poor chap was quite frightened, so got rid of him. He's done it during sexy times, as well. It was a guy who I was going out with for a few months. He was really nice, I thought laid-back, Canadian chap, and he seemed really empathetic towards Xander's needs. We had one particular night where, urgh, we'd just had this really cringy discussion about him staying over with Xander at home, for the first time. And I had just been easy breezy about it, saying, "Hey., there's no pressure, I'm on this single parenting-thing. I don't expect anything off you. I don't even know why I said this. So, we came home to my bedroom, and Xander just started screaming and screaming, which I guess- he didn't like the sound of his voice? Or maybe he didn't like the... He's very perceptive and can hear the tone of how I am with someone too. So maybe, inherently... Or maybe I'm just reading too much into it. Maybe he was just having a bad night.
Rina Teslica 42:54
Either way, no, no, he knew that he wasn't the right one.
Vicky 42:57
So he screamed and screamed. He gets so upset and anxious sometimes that he can't breathe properly, which then meant he couldn't swallow his own saliva and then we had blue lips, which led to me being panicked. So, in short, I burst through the bedroom door to this chap, after I just couldn't calm Xander down, and said, "Right, that's it- We've gone to get up, get dressed, we're going to A&E". And this poor guy, got up and put his clothes on. Then, by the time I had the bag packed, Xander had fallen asleep. And I think it was an interesting moment of realizing that he was just inappropriate fit. He wasn't going to work with us- he's the wrong vibe. Xander didn't like him. So you know what, goodbye- next...
Rina Teslica 43:47
And that leads us nicely on to your current relationship. So, Xander clearly likes him. Give us a little bit of background. How did you meet? How did it happen?
Vicky 43:59
I have a lovely boyfriend. He is very worthy. We met in Lockdown. It was a Disabled Parent’s dream. I mean, the Zoom- dating element- don't get me wrong. Being locked up and Shielding was not quite so dreamy, especially with uncontrolled epilepsy. Gosh.
Anyway, so I met my lovely boyfriend after I'd had a Friday night Zoom chat with my friends. I kept messaging him to delay, saying that he'd have to wait a bit longer because I was having a nice time with my friends. I just couldn't be bothered. I was wearing pyjama bottoms, had a glass of wine on the sofa, then, switched him on Zoom and just met the loveliest human being. He's really empathetic, kind, honest, open, communicative, interested in life and I wasn't expecting him to be there. I think we were both a bit taken aback by the conversation we had, and hit it off from the very beginning. It took a long time for me to introduce him to Xander. I wanted to be sure that he was suitable for King Xander to approve of and they get on like a house on fire. It's really. I genuinely think that Xander thinks he's his friend, who comes round to play with him and he can get a bit difficult at bedtime doing, as he's doing that, 'No, I want I want to hang out with my friend, now'. He's got him wrapped around his finger. That's so nice. See, there's like a silver lining. You went through the shit and then you found somebody who is worthy of you and worthy Xander. I think is worth saying again- if you want someone that's cool. I had definitely come to a place that I didn't need anyone. For me, dating was actually quite an escapist little thing to do for an hour. Check out an app and have someone write nice things to me. If I'd had a really shitty day of epilepsy, particularly in Lockdown- it was just so full-on, caring for such a wonderful child, but his needs are profound.
Rina Teslica 46:07
So basically, instead of you at the end of the day, getting into a bath and reading a book, you jump on Hinge and
Vicky 46:14
Just 10 minutes or so of messaging. I enjoyed the Zoom dates, particularly, as it was good fun to meet some interesting people without ever having to leave your house. No need for a babysitter, putting on makeup, trekking all the way into town, to meet someone who's probably going to be a bit of a muppet. I mean, nice enough, but I'd rather stay home with my child to be honest. So, the tittle tattle...
Lauren Fenton 46:52
Here we go.
Vicky 46:53
My first ever post-marriage sex was with someone I had known for a very long time. He was a lovely guy. Xander was in bed. It wasn't actually particularly planned. He came over, we had dinner, wine, one thing led to another and we had sex under the stars, on the roof because I had a roof terrace. It was very sexy, apart from the baby monitor I had right next to his head, the entire time as I was worried that my child would have an epileptic seizure. The guy just kind of dealt with it. I mean, I say 'poor guy'. He did pretty well. I have to I have to say,
Rina Teslica 47:37
He got sleep with you.
Vicky 47:38
Oh helloooo. It must have been quite off-putting with me... having Marvin Gaye on and...
Lauren Fenton 47:47
You had Marvin Gaye on?
Vicky 47:47
I mean, who doesn't? Then, wait, Oh, what was that? Was it a seizure? "Oh, hang on. Keep that thought- I'll be right back..." I ran downstairs, checked he wasn't having a seizure, put him in the recovery position, sang him a song, all visible on the baby monitor. All is good. Said, "Mummy loves you", then ran back up.... "So heeeeey". It was so awful, but taught me some valuable lessons on how to not date with a child with uncontrolled epilepsy. Just yeah. Don't have sex anywhere near them. Afterwards, that night, I left him just to sleep in the bed by himself as I chose to sleep next to my baby, because he's my priority.
Lauren Fenton 48:52
What were you saying about having time for a bath or a zoom date as your Respite, for want of a better term after a difficult day of seizures? The term gets overused, but that's sort of self care that I guess is escaping the identity of carer, mum, and that role that you're constantly playing and having some time for you? And I guess that's true, in other relationships in general. Yeah, absolutely. You don't know it's about how do you make the time and the space for your relationship as a couple as opposed to just parents? You know, how do you do that right now?
Rina Teslica 49:38
I mean, I think back to COVID and when Arb's was working from home, we spent so much time together and we realized that, for like a year, we didn't argue once. And we realized that we argue more when we don't see each other. And we argue less when we spend more time together. So, it really prompted us to rethink how we spend time together. And he began to prioritize days off. So, now he'll have a day off during the week when Lua is at school, just so that we can spend the day together ,being ourselves and doing silly things, like we went to play mini golf, last week. So, we try and do this once a week, obviously, some days, we're not we'll do something really mundane or go shopping or whatever. But usually, we'll try and do something fun and interesting, because it's the only time that we're not a carer or mum, and he's not a bank manager. And work essentially, it's just made the relationship so much more fun. After a while, we've been together seven years now, it's like you start to lose the fight, especially if you don't invest in a relationship. And so, it's bringing back that sort of fun young. Yeah. We try to not talk about Lua as well. So, for that six hours she was at school, we have to just not talk about it. Not always, especially if she's like, done something really cute, or like in the morning. And she's you know, so we'll talk about that. And then sometimes I do miss her. So I will be sitting having lunch, and I'll go through picture and say, "It's really cute here, look". But we try. It's a way.
Lauren Fenton 51:24
And I think sometimes you need that time to to chat with a bit of distance as well, because he's actually, getting you. There are big decisions and big topics to talk about at times. And actually, the day to day doesn't allow space for that. We find that when we go out for dinner or, you know, our birthday recently. We have the same birthday. Yes. It's f**king irritating. The one day I could have had and I must share it with you.... Anyway, so we went out for lunch, and we did find that we were talking about the kids loads at the time when we're having lunch. But that's, that's okay. That's life. That's a common thread, at times. One thing that we do is, we are very lucky to both have quite large and supportive families. It's an Irish family. There used to be a thing when we'd go to Ireland and the family would say, please go away for and I will look after the kids. I love our family. Yeah, his brother and his sister both used to- they've got grown up kids. Now, they were really keen that we did that. And unfortunately, we were very obliging. Of course, one would have a go. So, then the next time we were over, the other one would ever get a turn. It's always been really helpful to have that like space because, if it's an hour here or there, or it's an evening, when you just literally are exhausted, and you've got all your kind of stresses from the day, it's, it's not quality time in the same way. So I think removing yourself from the parenting roles is, on a day to day, is really important. If you can do it. I know not everyone can. And we're really lucky to have that. But yet it has made a difference. And of course, I must mention my mum, my mum looks after them as well. Which is yeah, yes. Amazing. I'm so grateful for that.
Vicky 53:27
It's, to me, it's similar to the self care discussion that people with SEN kids often struggle with- just finding that time for you. And your point from earlier as well about making time for yourself is so essential. Your child can pick that up from you and similarly, one's relationship and putting in the time and effort- can be exhausting at the end of the day. But, even if it is just a glass of wine at the end of the day and talking about something completely different, or watching a TV boxset. It's essential to play that different role rather than just be the parent caregiver at all times. Because it's heavy stuff we have to deal with. You need to have that play, that balance to keep seeing the other person and, also to enjoy each other's relationship, remembering the other side of the person.
Rina Teslica 54:24
It's true, I think for us, because Lua was in hospital for so long in the beginning, and we were so we were both quite young and first child and we were just thrown into this, like friggin deep end of a deep, deep, deep pool. We had no nobody, nobody in our position and nobody understood. So, we just clung on to each other. And my mom at the time was just saying, you really need to invest in your relationship in this moment because you too are going through something so big and dramatic, that Lua will pick up on what's going on between you two, so you two really need to band together and work on each other to help Lua to get to a place where she needs to go. And I really, really took that on board. So I think, had we not had Lua And with all the disabilities, I don't think we would be as strong as of a couple as we are because of her. So I'm in a really weird, crazy way, grateful that we went through everything, because I can literally read his mind and he can read. So yeah, very grateful.
Lauren Fenton 55:34
It's so true that I think that shared understanding is incredibly valuable. Or bonding. Outstanding. It's not always going to be the case. And that's, as you've kind of outlined in your story, Vicky, everyone has different experiences and relationships, and they're not all going to be that.
Vicky 55:59
Well, I think it's, it's also worth stating that when there isn't that romantic-other person to share with, there is still a wider-extended network. And I'm so grateful that I have one, with some of my old school friends and some nights, I'd call up and download to them as to what just happened, with his health and being able to talk through what's happening in your life, and the decisions you need to make on behalf of your child and their medical needs- is so valuable, irrespective of where that that conversation comes from. It could be with my school friends, medical providers- I really appreciate those relationships in a way that I probably didn't, before having him. The wider network and the dependency in asking for help from other people is vulnerable, but really rewarding when you get it.
Lauren Fenton 56:54
It's so important. Yeah, so that you know, we, I guess Rina and I have described quite this kind of traditional, yes, parenting style, I guess it maybe more other than traditional, but I'd say we're fortunate and lucky situations that we're in. But yeah, your family, your support network is what you want it to be. It doesn't need to come from that. And I think that's, that also goes back to what you were saying about, you weren't looking for a relationship, you were happy with your most important man in your life. And being a single parent, you didn't need
Rina Teslica 57:31
that external person to come and support you. You were doing it all by yourself. And I feel isn't that thing where when you're not looking? You find it? And that's what's happened here. I think it's when you're so secure in yourself that actually that's when you're ready to have somebody else kind of come in. Yeah. Another question actually, how much does your partner have a say in how you kind of parent Xander? And the decisions that you have to make? Especially being a SEN mum? Does he have a say? Or do you ever do you ever ask for his opinion? Or is it all so you?
Vicky 58:08
Yeah, I definitely ask for his opinion and I really value and respect his view. He might be relatively new to this relationship, being a couple of years in, but he understands my child and he understands me and he's very logical and very calm in the face of, what are quite often, extreme emergencies. He can make paramedics laugh like I've never seen. I think he feels like it's his mission to make them laugh. But I am really grateful for for his views but he's very respectful of my boundaries and he will be the first to say, well, this is your call. What do you think? I'm here if you want to talk about it, and I can give you advice or I can just listen, what would you like? And having, even that self awareness is... I'm so grateful.
Lauren Fenton 59:01
That sounds wonderful but I'm not surprised that somebody wonderful is attracted to you. I have to say, I mean, after all the trauma that you've been through, how are you such a nice person? I mean, I know that's not helpful but it would be so easy to be bitter.
Vicky 59:24
You have a choice to choose. It's so cheesy- you choose love or you choose that bitterness, forevermore. My life didn't go the way I thought I was going to but whose life does? And this is part of the insane roller coaster of having a disabled child. You need to.. I am about to paraphrase Roman Keating..., you need to ride the rollercoaster.
Rina Teslica 59:47
Life is a rollercoaster, you just got to ride it.
Vicky 59:49
But it's true.
Rina Teslica 1:00:05
Okay, so i just sang it in an off-key but you have a choice.
Vicky 1:00:07
The last thing linked to this, that's worth saying is, I don't think we talk about these good news stories enough. I think as an SEN parent, we're all clear- we're knackered, at the end of the day, and we'll exchange stories on the grumbles. Every child with a similar condition- we all have similar grumbles and I love that community. I love that validation. But actually, in amongst that, I'm not the only story of someone who's found someone incredibly lovely to be their partner, as a result of or as a by-product of having a disabled child or just because they were going to come into my life anyway, who knows. But these stories are really not that few and far between at all- it is really beautiful, to see random people I've never met on our Instagram community, hearing about the empathetic, kind human beings, who've come into their lives and want to be part of their their child's journey and their journey and are honored to be playing some role, no matter how small that needs to be celebrated that there are massive upsides to this. 100%. So Vicky, as we do with every guest who comes on our show, we asked them for their hashtag awkward. So have you had any awkward encounters with you and your disabled child? Why yes, yes, I have. You know, one of the more recent ones was, I was in a restaurant with my boyfriend and Xander in his wheelchair, and we'd had with a nice meal. My son was struggling to eat because he's shortly going to be moved to tube feeding. He also looks disabled. Either way. We had a really lovely meal. And then it was kind of ruined, when the waiter asked my boyfriend, like, what's wrong with your son? My boyfriend is really open, so said, he's got a brain malformation, he has epilepsy and he's blind. The chap said that he had a cure. So £8000 pounds would buy us special water- it was some kind of alkalized water and all Xander needed to do was drink it, every day. And it's not a pyramid scheme.
Rina Teslica 1:02:39
So relieved.
Vicky 1:02:41
Yeah, that was my latest one.
Lauren Fenton 1:02:43
Jesus. What did you say?
Vicky 1:02:46
Awesome boyfriend said, You know what? I'm gonna take your number. Yeah, and tell me, what was your name again? Then we made a complaint and asked him not to say such things to people with disabilities in the future.
Lauren Fenton 1:03:02
Boyfriend is really lovely. Very smart move. Thank you so much, Vicky, for coming on the podcast. It really means so much to us. You have been brilliant as when you would be. Thank you for sharing your story or the the highs and the lows. Thank you. Anyone else to say thank you so much. Love you. But before we go, one last last last thing, what is your f**king normal?
Vicky 1:03:33
My f**king normal is at all times- I live with approximately five really bright, shiny colored helium balloons in my lounge, because my son loves helium balloons. And they're always at various stages of inflatedness. So, sometimes they can scrape along the ceiling and they follow you, from room to room. And that's my f**king normal.
Lauren Fenton 1:04:00
Beautiful. Lovely. Thank you. Thank you.
Vicky 1:04:04
They are quite creepy at night.
Lauren Fenton 1:04:10
Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.
Rina Teslica 1:04:31
So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at FkingNormalpodcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fkingnormal_podcast. That's f king normal underscore podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 1:04:55
So thanks so much for listening all the way to the end. We'll see you next time.
