S2 E13: Adoption and XYY Syndrome: Nicole Bateman chats with Caroline Wallace

In Season 2, Episode 13 of "Conversations with a SEND Mum," host Nicole Bateman chats with Caroline Wallace, founder of The SEN Business Mum, about her experiences with adoption and raising a son with XYY syndrome. They discuss the adoption process, the unique challenges of supporting a child with XYY syndrome, and Caroline's emotional journey, including a desperate moment when she was turned away by a GP.

Episode Highlights:

• The Adoption Process: Caroline shares her adoption story, detailing the steps and emotional journey she underwent to bring her son into her family. She discusses the joys and challenges of adoption, offering insights and advice for other parents considering or going through the process.
• Supporting a Child with XYY Syndrome: Nicole and Caroline delve into what XYY syndrome is and how it impacts her son. Caroline shares strategies that have helped her support her son's development and well-being.
• A Point of Desperation: Caroline recounts a particularly challenging experience when she reached out for help and was turned away by a GP while sobbing. She discusses the emotional toll it took on her and how she found the strength to keep advocating for her son despite the setback. This segment underscores the importance of accessible and compassionate healthcare support for parents and children with special educational needs and/or disabilities.

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Check out our sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

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Hello and welcome to Conversations with a Send Mum podcast with me, Nicole Bateman, as your host. Today, I'm joined by Caroline Wallace, who is a Send Mum herself, and also the owner of the Send Business Mum. So, hello and welcome, Caroline. Hi, Nicole. Thank you so, so much for having me. That's all right. Can you tell me and tell everyone listening a little bit about yourself and what your connection to the SEND community is, please? Yeah, of course. So hello everybody. So I am Caroline. I am a single adoptive mummy to a little boy who I adopted back in September of 2020. So he has just been diagnosed with ASD, and dyspraxia, and Just before he came to me, he was going through a microarray test, which is a genetic test. So he also got diagnosed with XYY syndrome, which basically means he has an extra Y chromosome, which has led to global developmental delay and has links to ASD and ADHD. So I think I'll just start right at the beginning. So I decided to have kids when I was in my early 40s. I was single. So there's only a few kind of options that I had open to me. So I remember going to my GP and sitting down and saying like, look, I'm really interested in talking about IVF. And he said, Caroline, like, I'm really sorry, but because of your age, you are classed as really high risk. And unfortunately, it's not something that we can offer you. on the NHS. So I came away and I was really disheartened, but I gave it a lot of thought and thought, okay, well, what else is open to me? So I decided I wanted to find out a little bit more about adoption. So I went along to my first event and I dragged my mum with me and it was just basically an open evening hosted by social workers and previous adopters. And they gave a presentation. On the process. And I remember sitting there thinking, this feels really surreal. Like what am I doing here? So I sat through the presentation and I came out and it was just like an open evening where you could ask questions and there was teas and coffees. And mama grabbed us a cup of tea and we sat down and she said to me, are you all right, love? And I remember looking at her and just thinking, no, and I looked her and I said, get me out of here. I felt like a complete fish out of water. I didn't know why I was there. I thought I'd made a massive mistake. So we put our tea down and we just left. So fast forward about seven or eight months, maybe and thinking about nothing else. I went back to my second event and it was that evening. that I signed the registration of interest form and started my adoption journey. So from that moment, that night, probably till I brought him home was about a year and a half. So it's not a quick process. And believe me, it's not an easy one either. It's extremely challenging. They dig into literally every single aspect of your life. And you find yourself having some Very frank and sometimes very difficult conversations. But the idea of that is so that they are extremely thorough about who they are approving as an adopter because they want a successful placement for those children that they have in care. So that's the initial stage and that takes a few months and you have a bit of a break and go to stage two and that is where you have group training with other adopters. So this was a chance for me to kind of meet with other adopters on the same journey, which was amazing because I was pretty much doing this on my own. I mean, don't get me wrong. My family were incredibly supportive, but they weren't actually in it with me doing the day to day stuff. So just having that opportunity was amazing. So from stage two, you go to approval panels. So my social worker and I went to a meeting and I remember like, they had this horseshoe table and about. 10 to 12 people sat around it made up of professional services, social workers, previous adopters, and they literally just fire questions at you. Like, what do you think about this? What's your opinion on that? What would you do in this situation? How would you support the child in this scenario? So you just have to answer in the best way that you know how, and then it's down to those. 10 to 12 people to decide whether or not you can be approved as an adopter. So once you go through that stage, you go to family findings. So this is the bit where you start looking at the profiles of the children that are in care. So you express an interest in a particular profile, and it will be down to those professionals that are involved at that point to decide whether they feel that this is the right match or not. If they do, It goes back to panel and you have another team of people that then will rubber stamp that and say, yay or nay to the match. Then after that you go to introductions. I mean, this is like a really brief overview. Obviously there's a lot more in depth stuff in there, but, and it's a whole process before you get to the introduction stage, but, It's a very, very meticulously planned introduction into you meeting your child. I think mine was about eight or nine days. So day one, you might walk in and just have an hour with your child, meet them for the first time and then leave. And then you kind of build on that day by day. And ultimately on that final day, You bring your child home to start your new life together. And believe me, Oh my gosh, like that journey home. It was about, it was about a three or four hour journey. And I remember just, I kept looking in like my rear view mirror and this little boy fast asleep in that car seat that I'd had empty for about four weeks before I went up. And. I just couldn't believe we'd done it and it felt, it was just like the most craziest moment of my life. But we got home and obviously started our new life together. And I took the 12 months of adoption leave and those first six months were really just about us finding our feet. So when he came to me, he wasn't walking, he wasn't talking. But there were no other real needs that were really apparent at that point. So I registered with my GP and got a home visit, but with a health visitor. So when she came, I said to her, look, I, I'm really concerned about his delays particularly his speech. I'd really like to get him connected with speech and language as soon as possible. And she said to me, Oh, he won't, He was only 18 months at this point and she said, Oh, he won't he won't get connected to anyone till he's two and a half. And I was like, well, he's got a diagnosis and it's really clear that he has delays with his speech. I really think it's in his best interest to get connected as soon as possible. So she said, no, I'm telling you now they won't take him till he's two and a half. So that was like a bit of a, a red flag to a ball with me. Watch me. I kept pushing and phoning and talking to people and asking for referrals. And eventually he got connected with Speech and Language and we had our first appointment with them in the August the following year. So to any parents out there that are being told to wait, don't, if you feel it's in your gut, just keep pushing and just keep fighting for it. So as he was growing a little bit older, like some of his needs started to manifest a little bit more and were more apparent. So I think When you get a child, no matter how they come to you, like, they don't come with this handy guide that kind of lists all the scenarios that you're possibly going to face and cross reference that to all of the support that you need to be connected to. Like, and I really feel from my own experience that you are just left to figure this out for yourself. There is nobody to take your hand and guide you through that and say, right, what are we dealing with now? This is where you need to be connected. This is the referral that I'm going to do for you. And it was only through kind of researching and talking to other parents that were further ahead in their journey than me that I suddenly found organisation and charities and places that I could get connected. And then once you were connected, It was, I think, again, from my own experience, everything was about a signposting exercise. You'd get to one, they'd signpost you to somebody else, they would then signpost you to somebody else. And I remember, I went into a meeting with a lady, and don't get me wrong, she was so lovely, and so helpful, very knowledgeable, but I walked out the door. of that meeting with a pile of leaflets and four pages of A4 paper with website links on them for me to go and do my own research. And like, it wasn't even, I couldn't even click the blooming link. But it doesn't, and it just didn't seem to matter. Like, I was really starting to struggle at this point. It just didn't seem to matter whether you were screaming because you were desperate for help. That help just never seemed to come and it was just being pushed from pillar to post. But we did start to get some really challenging behaviors at home with him and I'll be perfectly honest, I didn't know how to handle them. I didn't know how best to support him. I used to fall back into the only way I knew how to parent, and that wasn't the right parenting strategy for a child with additional needs. And obviously he came to me in the September of 2020, and I had now concerns that there were some autistic traits there. And bearing in mind he had a genetic condition already, but we didn't see a pediatrician until January of 2022. A year and a half later. And I couldn't believe like a previously looked after child had just kind of been left like that. We got the appointment in the January and we were still connected with speech and language, and we got connected with occupational therapy. So I raised my concerns with them as well. And they both did a referral to the indigo pathway, which is the pathway for assessment. Both of which got rejected. And I was thinking, why is that rejected? Not only do I think that I've got two professional services that also think the same, so I remember going back to speech and language and saying, look, I don't understand why it's being rejected. And she said, Caroline, to be honest, I don't know why either. It's very clear. There are traits here and he does need some support. And I think it's wise to get an assessment. She said, look, let me do it again for you. So anyway. When we went in for that first initial appointment with a paediatrician, I was obviously prepared, I'd had my list of things to talk about and I remember reeling them all off and he was just typing in on the computer and I thought, he's not even really making any eye contact with me. So I finished my long list and he said, right, okay, well, we'll book a follow up appointment. And I was like, Oh, that's great. That's not what I was expecting. I thought, well, maybe this is just information gathering and we'll go back in a couple of weeks. So a couple of weeks came, a couple of weeks went and still nothing. So I kept chasing and chasing and chasing for this follow up appointment and they said, you'll get a letter. And the letter took ages, but it eventually came through and said you will get a follow up appointment. A date to be confirmed, but it will be in August. I was like, are you kidding me? Like, we've got to wait till August. But then I thought, well, we're in lockdown. There's probably a massive backlog. Give them a bit of a break, like just batten down the hatches. Let's get through to August and hopefully we'll get some support then. August came and August went and still didn't get an appointment. So obviously we'd gone through the referrals still, and they were getting rejected. And we finally got that Follow up appointment in January of 2023. So it took an entire year to get a follow up. So after that appointment, we were waiting for the second speech and language referral to come back to confirm we could get access to Indigo pathway, but it came back and was rejected for a third time. So by this point, I was just. I was seething. And I was like, do you know what, what have I got to do to get him the support that he needs? So I phoned up and I was like, look, I don't understand. And the woman, bless her, she was on the reception. And she said, like, I can see he's on Violet Pathway. I said, well, that's ridiculous. So Violet's for genetics. And I was like, that's ridiculous. Just because he's on Violet doesn't mean to say he can't be on Indigo as well. And she said, no, I can't really see why he's been rejected. And she could obviously tell that I think I wasn't particularly happy at this point. And she said, look, let me get someone to call you back. So I got a call back maybe five, seven days later. And this woman had obviously been prepared that I wasn't particularly happy. So she came on sickly sweet. And she's like, don't worry, we'll get this sorted. I can see he's on the genetics pathway. We'll just slip this in. We can get him sorted out with this as well. So he hasn't got to go back and start at day one again. She said, I've got some paperwork. Let me send it over to you. Get that filled out, send it back, because I can see you've got an appointment in April to go back to the paediatrician. So I was like, right. And I should have listened to the alarm bells that were going off in my head at that point. Because I was thinking to myself, because she said, when you come back in April, she said, he'll look at the paperwork and you'll be able to get a diagnosis. And I was thinking, how can you diagnose a child from A piece of paper. So I thought, well, maybe that appointment is going to be a lot longer. He'll do an assessment and then we'll walk away. And I thought, you know what? I kind of got a little bit relieved and I thought, we've just got to hold out now until April and we'll get some help. So we went into the appointment and I explained the conversation and he went, Miss Wallace, he went, that is not how it works. He said, I'm really sorry. You do need a referral to Indigo. And he said, and currently you're looking at an 18 to 24 month wait. And I was just like, I was devastated. Yeah. I was absolutely devastated. So I got a little bit emotional. I think we do. Definitely. We're writing for our kids. And he said, look, let me help you. He said, I'll do a referral. He said, I've got some paperwork you need to fill out. And I went, let me stop you there. I said, I've had the paperwork. I've already filled it out. So he hadn't even seen that. And he's like, you've already had it? And I was like, yes. He said, right. Okay, well I'll do a referral. We'll take it from there. So in amongst all of this, my son started preschool in February. Right. And obviously I raised my concerns with the preschool at that point to say that I felt he had additional needs and explained what I thought my concerns were and I wanted to get the ball rolling with an EHCP. They said, No, you need to wait. We don't have enough evidence. So this is in the February. She said, you need to wait until October. Why October? I can't remember. And I was thinking to myself, I know that's a 20 week wait. We've got primary school starting the following September. I'm going to need to find a placement. I'm going to need to get this all in place. And I thought, do you know what? I'm not waiting. So I did a parental application in the May of that year. We've got denied assessment. So I then had to fight that and I went to mediation and thankfully got that overturned and got the EHCP finalized in May the following year. So that took an entire year as well to get it secured. And thank goodness I did it when I did it because I then, I think I got the very last place available for reception for the specialist provision that he's in now and I knew that he would not cope in a primary school mainstream primary school because of all the struggles and challenges he was already displaying at preschool. If you're being told to wait for things and it's in your gut and you don't want to wait and just, just go for it anyway. So all through this entire process, I think my mental health absolutely plummeted and I think as we were talking before, I think you, you kind of. normalize the situation because you always feel like you're being told that you're either making things up or it's not as bad as you think. And I remember this one particular conversation with the GP, my son had had a really bad cough and I took him along cause I thought he might have a chest infection and to add into the mix, when he gets ill, he gets a high temperature. When he gets a high temperature, he has febrile seizures. They are terrifying. And I know you know a lot about seizure. So, I went in and I explained the situation. He said, I wasn't sure if he needed antibiotics. So she listened to his chest and then just said to me, That's not a chest infection. Proceeded to then tell me what a chest infection was and made me feel like a completely miracle mother. And I thought, do you know what? This is my opportunity. I'm in front of another professional. Let me see if she can help. At this point I had a complete breakdown on her and I said look I'm not coping, the behaviours at home are really challenging, I don't know how to support him, I've been trying to find some help and I'm not getting it, can you help me? I'm really looking for an autism assessment and the minute, the second I said that A word she shut me down and she said, He won't get an assessment until he's six. And I said, but I know that's not right. Like I know other children that have had a diagnosis before that time. She said, he won't get it till he's six. Took her stethoscope off, sat down, started typing up her notes. And I knew that was that appointment. There was me sat there. I had crying all down my face, not everywhere. And I was in that moment. I was just like, I'm in this on my own. So I packed up our stuff. He was in a buggy and I remember going to the office and the door was feeling really heavy. It probably wasn't, but I was still sobbing. And you know, it's one of those buggies where the wheels just did not do as they were told. It's not what you need. Trying to navigate out of this door. I had to get out and she still just sat there. It's just, it was heartbreaking. I just thought, I've reached out and nobody is there to help me. So I went home and time passed and we just got through day by day. And then I thought, you know what? I've just got one other option that I can try. So I went back to post adoption support and I basically said to them, if you do not want this placement to break down, I mean, there's absolutely no way I ever would have walked away from him to threaten that. And I said, if you don't want this to break down, then you need to help me. So to try and cut a long story short, this was May of last year. They have some funding. She said, absolutely, we'll not pay for a diagnosis. This is not what you're going to get. You might get an idea about traits. And I was like, I don't care. I said, just give me something. Yeah. And she offered me a sensory assessment. Wouldn't give me anything else. So I said, yeah, I'll take what I can get. But then come September, I think I got a phone call from her. And she said, we've got funding. And I was like, well, yeah. Okay. You've said a sensory. She said no for everything. Amazing. Really? She says, yes, you can have the neurological and the sensory. She said, you can have the whole lot, but I must make it really clear. There's no diagnosis. I was like, amazing. So we had the sensory assessment in November. We had the neurological assessment in December and I walked away with a, with a diagnosis. Neurological assessment. I've got the diagnosis. And that is the start of my SEND journey, and I know it's only going to continue, probably three years in. But that three years, taking, getting that many rejections, that many kind of doors closed in your face, how you reached out for help, and They didn't help until that, that last moment, like nearly three years on. And it's so, it makes me so cross and heartbroken because it's not, this is not a kind of one off story. It is your story, but the way that people are rejected or not believed or told, Oh no, you won't get this support. Don't do that. Don't do that. That happens to so many of us, doesn't it? Where, things are rejected and, and you there, like many of us having to show that constant fight, resilience, mentally it does, it does wear us down, doesn't it? It really does. And the problem with, with the delays and the no's and the constant pushbacks is that it's just. Making that so much more difficult for the families to cope. Yeah. And the children are constantly being put in settings that they can't survive in. Yeah. And that's the harsh reality of it. They're not getting support to help them in the situation so that they can thrive. Yeah. And that's hard. That is, and that's what we want. We want our kids to thrive, and that's why we do continue to advocate, because we want them to feel safe. That's great that you've, you went against a choice, and you put your parental thing for the HEP in, because otherwise your son wouldn't be in the specialist setting that he's in now. And in all honesty, he wouldn't be in school at all. If he wasn't in a specialist, he's got eight children in his class Anything more than that, and I think would just be so too overwhelming for him. Yeah, yeah, so well done. Well done, Mum. Well done. We need to be like, yeah, I've seen it, you've got that, you've got that for your son, and it's But, at what, the cost of mentally having that exhaustion, emotional drain. And I think it's good to be open about that because, I chatted up to someone in, in the last season on the podcast and saying, actually, it's okay to say like, I've referred myself to steps to wellbeing. She's gone to therapy, sometimes you need that extra support, don't you? I did exactly that. I had some sleep therapy because you just get to a point where you're just, you can't see the wood for the trees, you don't know how you're going to go on and you're just, and you get to the point where you think, I need to support myself in order to support my child. If we're not in a strong enough place to do that, we haven't got that capability to fight the fight that we need to fight. And it is a fight, and it's heartbreaking to say that, but you have to be prepared to stand up and fight for your child to get the support that they deserve. Yes. And hopefully one day, it won't be like that. No, hopefully. And, that's why raising our voices and sharing these stories. Cause you may be listening and you may be like, yeah, I really resonate with this and I am exhausted. And, I mean, even the, just this week, I got to a point myself of just total overwhelm. It gets to that point where your head is so full of things. And, I did some free writing. I don't know whether you've ever done free writing where you just literally just write whatever's come to your head, no structure, doesn't need anything, but I found it really helpful this week. And what came out was that I can't help others if I don't help myself. So, I am now, like three and a half years in, I've been, on high alert for since that first seizure that my son had, basically, and just that fight, and it's, Now, I know this, you know that you've got to help yourself, you've got to look after your own mental wellbeing to then be able to regulate your kids, to be able to, chase the council or chase the, you know, whoever you're chasing and fight for that. But sometimes we just need that reminder, don't we? Yeah. And I think you've just got to try different ways and find out what works for you. Because not only do we have a life where we're just fighting for our children's needs, we have our own needs as well. Like, we have other things that are going on outside of looking after our child. I have my own health conditions and diagnoses that I'm working through. And sometimes, That does put us in a really unstable place and not feeling like we can then fully cope when those really big situations happen at home and you really need to stay calm and level and try and support your child. And I know for a fact, I don't always do that. And then the mum guilt hits and I have to remind myself that, you know what, you're human. You are. We are. We are human. It's so hard. I'm really trying to work and I mean, it's not something that other people might be able to try, but mum guilt is huge and I'm really trying to work at reframing that. So looking at the situation and thinking, I didn't handle that in the best way possible, but why didn't I handle that? What else was going on for me? Why was I not in that right place and what can I put in place? On what can I learn and do better next time and not make it about mum guilt, but make it a learning experience because every day is a school day. Yeah. Yeah, definitely. And a lot of us mums, we like to research and find out loads. We like to learn, but then yeah, taking that time to, to think about the situation, reframing, thinking about what can I learn from this? And move forward in that I think is really valuable. So yeah, thanks for sharing that. So as we kind of finish off what's something that you can share to just inspire, inspire and encourage the listeners. I think we've covered a few things in the fact that please don't ever give up fighting and don't ever feel like you are normalizing the situation. I think so many times and I it's put down to bad parenting and I don't just mean from Joe Public. I mean from the professional services and you then start doubting yourself and start like my whole experience with the GP. I felt like a neurotic mother. I started reaching out and screaming for help when I was having really challenging behaviors at home with my son and not knowing how to do that. And I was given a video and told how to parent through a video and told to come back in eight weeks if it's not working. And then I bought the triple P parenting course and told to do that. And I'm like, that doesn't even apply to children with additional needs. So ignore what you're being told. And if it's in your gut, then just keep fighting because we have to be the voice that perhaps they don't have and fight for that support that they absolutely truly deserve. Yeah, absolutely. Thank you so much for that. So if people want to connect with you, where, where, where's the best place to connect with you? I'm over on Instagram, predominantly on Facebook. I am currently working with Send Mums. I run my own business. So if you are looking to find that flexibility and freedom that we need around our children, it not being a desire, then I do help. Women to set up their own business and how to do that around caring for their kids. So if that's something you're interested in, I have a free group. Please feel free to come and connect with me and I'll be happy to give you access and I'd love to have you there too. Yeah, excellent. What's, what's your free group called? It's called simplify your business, the SEN business mom community, but I can give you some links if you want to get some on the show notes. Excellent. That's really helpful. And cause that's, like you said, flexibility. We need that. We've got the appointments. We've got the phone calls that we've got to make. We've got to chase this, do this and write emails. And like this takes hours sometimes, doesn't it? And you just can't, you know, and if you call out cause your child is ill or child, you just can't. Can't do that. I, I had to leave teaching because of that reason, because I kept getting called out for seizures. Like it just wasn't possible to leave the 30 kids and just always get those calls. So yeah, there's many of us, isn't there? As said, moms that, that do need that flexibility. And so that's great that you help and, with a different system and give ideas and things like that. So definitely go and connect with Caroline as well. So yeah, thank you so much for coming on. Thank you so much for having me. It's been an absolute pleasure. Excellent. And make sure you have a listen to all of the different episodes that come every Wednesday and I hope you have a lovely week.