Episode Transcript
Speaker 1 00:00:09 Hello, and welcome to the wonder Beba podcast. My name is Sheena Mitchell. I'm a pharmacist in mom of three. I'm here to chat all about child and family help. I really hope you enjoy the show. So today I am joined by Miriam Kenny from involve autism six six w I am talking to Miriam today about autism. So Miriam, thank you so much for joining me. Can you, first of all, just tell me a little bit about yourself and involve autism and how it all started, and I suppose why you do what you do.
Speaker 2 00:00:45 Uh, hi, thanks for having me on. I am the mother of an autistic child. Who's now 10 and I started involve autism, uh, nearly well, four years ago, really, uh, particularly around advocating for school places in our area. So when it started off in double six and six w only one school had better classes and there was nothing at second level. So that was a huge concern. And as I kind of set it up, things have grown and there's lots of parents locally. So we have three pillars within involve autism that support advocacy and inclusion. So we have monthly support meetings in the evening, and then we have coffee mornings as well for parents. And that's a very supportive network. We also do a lot of advocacy and particularly around education. And then the inclusion piece, we're really looking at, trying to include our children in the community more.
Speaker 2 00:01:37 Um, some of our children are involved in the ran rockets, might be the tear near tigers, which is, will be what you find is for me is that, uh, it was very isolating having an autistic child, particularly in our own area, because it seemed like there weren't any children here who are autistic because most of the children that would've had the same level as me as my own son were not in the area because they were kind of either bused out to the other schools. So it was very difficult initially, but it turns out there's actually quite a lot of parents in the area and a lot of children in the area who are autistic. And I suppose we've got a great group of parents and very supportive to each other. So it's been, it's been great. It's grown very organically and we're on Twitter on Instagram and also have a private Facebook page to try and give support that way as well.
Speaker 2 00:02:24 And also we've developed great friendships. I suppose a lot of our children probably would be around the same age. Now there's more and more parents joining all the time, or we're not just about double six and six w there will be other parents from the surrounding areas. It's all about what suits yourself and where you're most comfortable with and who you'd like to kind of be with. I like finding your tribe, you know, and being part of that and people are always very welcome. And the other thing we like in particular, I think is that we have a lot of the, the dads involved as well, which is lovely. Um, a lot of them are very involved in their children's lives and very committed to their children. And we great advocates on our children's behalf, in the group, both men and women, but it's just such a lovely thing to have. So, so many dads involved as well. We're very proud of that.
Speaker 1 00:03:04 Before we go into understanding autism a little bit more, you spoke there beautifully about your own area and how it grew organically. And I would just like to say that I've been watching you for some time and it's not been all that organic <laugh>, you've put a lot of hard work in it as well. So, you know, I absolutely think that you should give yourself a pat on the shoulder for that. Thank you. Um, but it's hard because you're one area, you know, in Dublin, so nationwide, like this problem is everywhere. So there may be people all over the country feeling very isolated. The key message from what you're saying there is that it's so important to speak out and speak to people and try and get support because that isolation is very difficult.
Speaker 2 00:03:53 Yeah. And I think it's to reach out and don't be afraid to reach out and it could be one or two of you that start off. And then the other person knows somebody else. It doesn't have to be very formalized. You know, ours has become like that. And there's lots of great groups in Dublin, in Dublin there's groups, um, around the country now, I think, and there's lots of great partnerships, great Goway, um, autism partnership in Wexford is a cottage autism network. And there's other things happening around the country. So, you know, not to be afraid to reach out, I suppose, lots of people when they're parents and I only have one child and parenting itself, you know, is a new thing for lots of people. And they meet these people, maybe the playground, they have a chat and then you meet them at the school gates, but when your child, or is autistic or has, um, you know, might have any different challenges, sometimes those, uh, possibilities don't come your way because it's actually quite difficult to do that.
Speaker 2 00:04:48 And maybe your child hasn't been diagnosed yet. You're not quite sure what's wrong. You don't really know you have no experience of it. So that can be very, very isolating then, because you just think, oh my God, my child now might have a meltdown or might not be able to cope in this environment. And I actually don't know what to do with it. And then I don't know, within a parenting situation, people are saying things about their child and you're going, God, what's not happening with my child. My child's doing something else here. There must be something wrong. So I suppose just been confident to say, do you know what I am not the only one? And what's been a great support for lots of parents, is, is this Facebook groups. So things like autism mammy and things like that, and there's autism families Ireland. And, and it's great that those things are there for people. And it might be a way for people to get connected. And there's some great local groups here as well, you know, um, in different areas of Dublin as well, beginning to be formed, that's all really positive. So I suppose it's kind of like field of fear and do it anyway. It's all about connection and trying to get connected and, and, you know, within that connection, it gives you support.
Speaker 1 00:05:58 Yeah. Okay. We could probably dive into that a whole lot more, but just before we move on, I think it's really important. Obviously there's a lot of people listening who have heard the term autism a lot, but maybe don't fully understand what it is to be an autistic person. Can you explain if, if possible, just what autism is. If
Speaker 2 00:06:21 You're looking at autism, you've got the medical model through the DSM five, which is the diagnostic tool that is used for, for autism. So it's quite, when you look at that from medical perspective, the, the wording of that is in, in itself can be quite difficult to navigate, but I was just looking at, um, one of the great, uh, things that has come about in Ireland is as I am, which is run by, um, Adam Harris, who's himself autistic, and there is phenomenal resources on their website. So when I was thinking about this, I think probably the thing we could look at is that autism is a lifelong developmental difference or disability. It is characterized as a difference in communication and socializing preferences and the differences in how a person experiences the world around them. And I think that's a really good synopsis. So what would that mean from our sense, our son communication would be difficult.
Speaker 2 00:07:09 We would have a significant speech and language delay, and that's probably when we would've noticed it the most. So the communication and also socializing would find that difficult. And that's his, and I suppose the one thing they would always say is that every child is different. They do have common traits, of course, but this the differences and your child is your child. So to remember that 37% of people who are autistic might also have an intellectual disability and that's a different profile again. So it's really, it's, it's comp complex enough and there's lots of things that go in with it, but it is also to try and embrace the child for who they are when you understand it more yourself. And it's the understanding of it and understanding your child and meeting your child where they are at. But that takes a while because obviously if you have a child and you're not quite sure, you know, what's going on, or there's something going on, then you get, you might get a diagnosis if you're lucky enough to get one, because it's very difficult for parents to get that at the moment, you know, and then you're left with, you know, the kind of there can be quite a bereavement for some people or not.
Speaker 2 00:08:15 That depends on you, or people can be relieved to say, oh, do you know what now this makes sense. What am I going to do? So within that, you know, there's great strengths within it. And it's about looking at your child's strengths at all times, and try to, you know, work with them and really begin to understand your child. So I dunno if that gives you a good
Speaker 1 00:08:36 Yeah. Flavor
Speaker 2 00:08:36 Of it.
Speaker 1 00:08:37 It absolutely does. And I think there, like the main emphasis on what you said is just the thing that I suppose stuck out to me and particularly from the, as I am description is, is differences. So it's, it's a key difference in a way, you know, an autistic person will communicate, but some of the characteristics that I read on the, as I am website, as you said, it's a great resource for young children. They say potentially young children. You may notice it because of an avoidance of eye contact or not smiling back in response. Things like taste, smell, or sounds may be triggers or ag aggravating. They may display repetitive movements and they might be kind of repeating some phrases. And for older kids, then not seeming to understand other people's emotions and also finding it hard to say how they feel and the need really for a strict routine. But I think like you said, there, what I've learned just from speaking to you and, you know, reading on as I am is really every child is different while you can list characteristics. They're not a definition and it's very important as you said, there to go child by child, um, yeah,
Speaker 2 00:09:59 You need to be child and tune into your own child, but that takes time. Do you know what I mean? So I would know that our child loves routine and it is, he is restrictive in his routine and we know we have to prepare. So if you're a parent who knows that, you know what, in this situation, my child will find this difficult. So what I'm going to do now is I'm going to prepare him for that. So say we're going to a new place. We've been invited somewhere, could be a play center. We'll go online. We'll go and see pictures of that. We'll say, we're first, we're going to go in, you know, in DOT's car, whatever. And then we're going to go to the play center. And then these people will be here. You'll be here for that length of time, then we'll finish and then we'll go home and prepare him.
Speaker 2 00:10:46 Well, then he'll, he'll enjoy it then because he knows what's happening. So I think it's really important. The sometimes children who are autistic respond very well to using visuals, very good visual learners, very good visually. And they know what's going on, on as a result of that and using that. So your, what you're trying to do is scaffold around them. So for, for them to be enabled, to participate in what they want to be participating in. So even say with the ran rockets, they've worked very closely with people who've been involved in the club, actually not gonna education psychologists and also OT. And they've helped them devise the program so that the children are able to participate as much as they can. They know exactly what's gonna happen. And it works really well. So it's all about planning a lot. So you begin to learn that you can't just, well, I, in our situation, it might be the same for everybody else, but in our situation, we can't be over overly spontaneous.
Speaker 2 00:11:38 So we have to plan. But I suppose what I'm trying to say is every child is different and the learning around it is quite a steep curve, but there's things that you can now go and look at. We were talking about, as I am this Middletown center for autism, there is also a national autistic society in England. And these things really help parents while you're trying to figure things out yourselves with some great books that are written there again. But sometimes that can be very overwhelming for a parent. You can't take it all on board and you won't know your child until you understand your child a little bit more. And that takes quite a while. So I mean, it is overwhelming. And so not to take that away from people, but then that's the support piece. Isn't it? That's the piece you want. You want to be able to reach out, could be families.
Speaker 2 00:12:25 Some families don't understand it. That can be difficult as well, and they might be going through something theirselves. So also as I am actually have a support line for parents now as well, or parents or autistic people, it's, it's cross the gamut. So it, it, it's great to hear all those things are there. So I suppose for people not to feel, oh my God, I'm the only person here or my child's the only person here. And to try and to kind of learn a lot more, uh, around it, I suppose one of the positive things that's come out of COVID these things like zoom and using webinars. So you've been able to access really phenomenal things online that maybe you might have been as able to do before. And that can be very helpful for parents who do have autistic children and, you know, find childcare can be difficult. They can pop on for an hour or something like that, you know, and inclusion Ireland as well. They're very good as well. So there's lots of things out there. So not to be afraid to kind of try and see what support's like. Yeah.
Speaker 1 00:13:23 One thing there, just when you're talking about perception from people's families, in terms of maybe addressing some of the confusion or lack of understanding that your own family members may have when you're telling them that your child is autistic or that you're going through the process of assessment, obviously there you flagged it as I am, would be a useful resource to maybe send on your family members. And also, I think it's really important for parents to know that there is no known cause of autism because it's a conversation that you hear people trying to identify a reason. And it's, it's just important to emphasize that there isn't one.
Speaker 2 00:14:10 No, and I think there's a historic things around parenting and about motherhood around that years ago. Um, and that could be quite difficult. So really, I think when you don't understand, maybe that the child is finding a situation stressful and it's somebody else that might look like, oh my God, that child is, you know, their behavior. Isn't, you know, we're not happy about that, but what that really is the child's trying to communicate something and might not be able to communicate. I E this is too much for me, and this is too unstructured for me. And I'm finding this very stressful. So that is what you are seeing. So it's not a child like in the inverted commas of the old way, that child's just a bit bold, you know what I mean? They're not bold, there's reasons for it, you know? And then again, it's to have people who are understanding of that, but parents can find it quite difficult maybe in with family because family don't understand it either.
Speaker 2 00:15:05 So I think you have to give your own family time as well to come to terms with something like that, because like they're going through their own process as well, you know, and maybe they don't have understanding, but we would find that once parents and, you know, you'll always have one or two that don't, I'll never understand it, but in my own case, my own, I, I, my parents are, are not no longer with us and they're not around a long time, but my own family and my own brothers have been phenomenal. And my husband's parents and family have been great too. So that, that has provided us with great support. But I think you do have to give other people time or a break because they're not going to know everything either. And, you know, we have to kind of bring people with you and say, look, I'm just gonna explain this to you. And, you know, and in explaining that most people will say jeepers, the more and more, I suppose, people become aware about autism and what that looks like. I think we're going to, you know, things will improve. The environment has to be right as well for autistic children and adults, you know?
Speaker 1 00:16:05 And I think that's it, um, a lack of compassion only comes really from a lack of understanding. So,
Speaker 2 00:16:12 Yeah, yeah. Yeah. So just, you know, and people don't mean it, so, and they'll always have somebody they'll always be warn as they'd say, but you just leave more.
Speaker 1 00:16:19 Yeah. How common is autism in Ireland?
Speaker 2 00:16:24 Well, the prevalence rates that are used, I think at the moment is at 1.5, 5%, right? So that'll be nearly like one in a hundred, but like, I that's, what's used at the moment. Right. But the prevalence rates up north are higher. They're 4.5%. Now, does that mean prevalence rates are higher in the north or that diagnostic access to meet a clinician who says, yes, your child is autistic. We've got a huge problem here about assessment. So it's very hard to know exactly the states then would have different figures as well. But the prevalence rates that I'm quoting there are used by the national council for special education is 1.5, 5%, which is kind of a little bit lower we would feel than is what the reality is.
Speaker 1 00:17:08 Okay. If you're a parent who has noticed some characteristics in your child, that you feel you want to have them assessed, just so that you can access supports that your child has a right to, and that you need as a parent, what is the process for going for assessment? I know you mentioned there that it's very difficult to get assessment in Ireland. So what's available through the public system. I've, I've heard a lot of narrative about people having to go private.
Speaker 2 00:17:41 Um, so really what you're, what, what you, what you would hope would happen would be probably somebody would say, look, there's probably something going on with your child. You might be the person who's referred to a pediatrician, uh, and a pediatrician might say, you know, I think your child needs to look at maybe going for an autism diagnosis. You might come to your GP and your GP says, you know what? I think you might need to go for an autism diagnosis, or you might be through the public health nurse. If your child is very young, you know, and it's kind of within all of that, an autism diagnosed the point of view to the health service. You will apply for an assessment of need. Now it's quite complex. I'm not getting into the ins and outs of what, what that's about. So you would hope you go to the HSC.
Speaker 2 00:18:23 Um, you apply for assessment of need. And that was within the disability act is supposed to be done within a particular space of time. And there's been huge issues with waiting lists and also the way in how they have been doing assessments, or they have not been assessing, you'll see, in the media, there's been an awful lot going on with that. You would be referred to the HSC. And then of course, if that's not an option for you and you're waiting, waiting, waiting, um, then a lot of parents would go, uh, privately. Now the very important thing about going privately is that you're going to somebody who is properly recognized and to be very careful about that, because you're vulnerable when you're looking and to make sure you the psychological society of Ireland and you don't need to be registered, I think with them, but just to see other recommendations from other parents, maybe, maybe going that I know people can't recommend people, but you might get a name for somebody and make sure you're look looking at the multidisciplinary approach.
Speaker 2 00:19:21 So you're looking at not just, um, maybe with the psychologist, as a speech therapist involved, maybe an OT, you're getting a full picture of the differences or the challenges that your child might have and on what you might be able to do to support that. But the thing at the moment is the waiting list to do with the health service are very long. And there's a lot of change going on in relation to how, uh, disability services are being, um, administered in, in Ireland, I suppose. So that's caused a lot of issue and then the private route, why do you need it? Right? So you don't need a diagnosis of autism to access support in school. You don't need it, but you do need it. If your child needs the extra support of a special class at early intervention stage at primary at secondary level and or a special school.
Speaker 2 00:20:15 So this is when people begin to really panic. You know what I mean? So if you're in, if you're in a situation where you have your five you're six year old in school, they've started school, it becomes quite apparent that it's quite difficult for them. Um, the schools can identify that child and hopefully get some support from an SNA or learning support. But within that, that depends on where what's the school's resources are like. So it's complex enough. So to come back to the question about diagnosis, that is the way to go, to get a comprehensive diagnosis for your child. And in doing that, maybe it might help you to understand them a little bit more from the services point of view. Again, we have community network, disability teams. Um, there's been quite a change, um, to do the progressing disability services. And that's interdependent on where you live as to what kind of supports you're going to get.
Speaker 2 00:21:10 And there's, again, there's a whole issue around that. So what a lot of parents do, if they can't afford it, not every parent can afford that. And that's, this is what the issue is. And it's completely incorrect that, you know, anybody should have to really suffer like this when they're trying to long waiting list. So parents will then say, maybe get a diagnosis and then we'll go and get private speech therapy and O OT and physio or whatever they need or psychology. Then some parents would be fortunate enough maybe to have something like health insurance that will cover some of that. And that could be very positive way of doing so. It might, it depends on different plans that are there. You might get 50% or 75% back okay. For them. So that can help. So it is very difficult for parents who are just starting on a journey again, you know, um, to know what to do there, but it's to reach out. Um, again, sometimes it's, it's the other parents that tell you what to do. There are waiting. I tell you what I did and who did I go to and all that kind of thing.
Speaker 1 00:22:12 And what is the impact on a child in terms of missed early intervention?
Speaker 2 00:22:22 Well, there's a lot written about it from an SLT point of view, learning how to communicate in certain sections. Some children may be nonverbal and within that again, they might need, um, assistive technology. You know what I mean? You're meeting the child where they're at again, and you're saying, okay, what does this child mean to say with something like speech therapy with occupational therapy, very good for like a regulation for the, for the child, maybe around sensory input about you learning about what their sensory profile is like. And within that, then you know what to do with your child, you know, to kind of help them maybe a little bit calmer. So all of those things I think would be very important. So you're trying to set the building blocks so that the child will, you know, you're, you're helping them to build up so that they, yeah, yeah.
Speaker 2 00:23:11 The progress. Yeah. And, but progression in the sense of what, how they will progress themselves. You're trying to give them the tools. Yeah. Um, and, and I suppose communication and not being able to communicate. And it also, again, is something that is a fundamental, right. That should be able to, you know, communicate and given access to things like assist for technology if you need it, you know? Um, and also to learn how, you know, communication and also to help you with things like routines and things like that and how to get your child, or it could be very basic things like a child might have difficulty with dressing. So it's giving your child access to all of that very early on. And I suppose it kind of, it gives the child, the building blocks, I think, you know, but I think parents shouldn't have, it's very important, but you know, some parents get into a big panic then, oh my God, I didn't know. My child was autistic and now we've missed out and all that, you have to be where you are and that's where you are at that time. And then if there, if you have a possibility of trying to do things well, then this is just go for it then
Speaker 1 00:24:11 I suppose. Yeah. Like what you're saying there is supporting your child to be the best version of themselves themselves.
Speaker 2 00:24:18 Yeah. And, and not to be, you know, it's hard enough without berating yourself or, you know, it's already hard enough. So, you know, go easy on yourself. You're doing your very, very best. Unfortunately, as a parent, you should be getting the supports to help you with that. But you're probably not. And that's so a lot of the stress around having an autistic child is not about your child's autism. It's about the lack of services, the lack of school places. So it's not actually about your child. Sometimes your child gets lost there somewhere and not saying things aren't difficult for. And so lots of parents in our group would report that some of the children would find sleep very difficult. And then, you know, trying to work with that. And then if you haven't slept and your child hasn't slept and then you're tired and you have other children, and then you might more than one autistic child, it can be very difficult for parents. So it's, it's trying to, to manage all that as well, can be very difficult for families.
Speaker 1 00:25:16 Is it just make your heart? Absolutely. Think to think that early intervention can remove some of that burden from the child, because obviously the communication piece is huge because we know that autistic kids obviously may have concerns about busy or loud or whatever type of environment. And if they can't communicate that the parent can't identify ways,
Speaker 2 00:25:45 No. And all you want to do is separate child. But if they had ways of kind of like, you know, might have something again, they can point to, they might have visuals that will help them with that. They might learn that, you know, I'm actually, I'm getting stressed here, you know, as they get older, you know, to being able to identify that, to say, well, you know what, I need to take myself away from this or everything, but it's not going to make a child. Not, not what they are already. It gives them the, the, the skills, I suppose, that in, as you said, makes the best version of themselves. And I think it's important to say that, you know, because as a parent, your expectations could be, all right, now they'll get this and they'll be fine. But then you realize that actually, you know, the challenges are there for them. Our child was diagnosed very early on at two and a half and it was very apparent. And now he's 10. So that's a lot of learning and is a huge learning curve for us within that. And it'll be another learning curve as he gets older.
Speaker 1 00:26:41 I think sometimes people misunderstand and don't realize that if you're autistic, you're autistic forever. Yeah. So you need to find ways to live your life. And
Speaker 2 00:26:51 Well, it's a lifelong developmental condition is what they'd say. So within that though, what does that mean for, for your child? So to, but, but again, don't think, oh my God. And I, I think I, what I've decided to do of late is to say, I'm going to enjoy my 10 year old. Yeah. Because if I start worrying, which I would've done a lot about, about the 21 year old, I, I can build, I can do what I'm doing now to ensure that from an education perspective, EDU very important for all children, doesn't matter who you are. Every child should get an excellent education. It doesn't matter. And I mean, that is socioeconomically and everything. I have a great passion about that. So the education or the building blocks for all of this, right. But you want to try and enjoy the child that is in front of you and enjoy and embrace your 10 year old because he won't be 10 forever.
Speaker 2 00:27:39 And there's great joy in our child as well. And he does have his difficulties, but there is great joy and people, people are very, very fond of him, you know, and he is, we're very lo oh, look, you know, we're very, I'm obviously <laugh>, I can say that, but he does. I'm not saying that it's saw roses in the garden, but, but just to acknowledge that and, and his personality and, and to let him to be who he is and to en try and enjoy him because it gets, you know, and, and that's okay for me to say, because we have managed, we have an only child and both of us are working and we have been able to support our child by getting access to services, which I know other parents haven't been able to do that. And that's the heartbreaking bit because unjust society, you know what I mean when that happens? So I suppose part of the advocacy piece for me is, you know, being a voice for my child, I suppose, on such a stage when he may be able to be his own voice, you know, so our involve autism is a voice for autism in our local community. And it's about that voice and raising your voice and being the voice for your child, try and enjoy them in somewhere. The other, you know, 10 year old is a 10 year old. They won't be 10 forever
Speaker 1 00:28:50 <laugh> and actually it's important for all parents to remember that because lives are busy and sometimes we just forget to stop and breathe and enjoy the now. So I think that's a great point
Speaker 2 00:29:04 And I think it's really good to celebrate. So we might have something and I'm not talking about getting the medals. I'm talking about celebrate when a child does something that they found very difficult to do. Our child recently learned to put on his coat. And that's a huge thing for us. It's been at that for ages and the school have been very supportive as well. They've been fantastic. So it's so lovely that he's got that independence. Do you know? Yes, absolutely. And things like that, or goes and gets some juice himself in the fridge. And that is, that's taken a long time, but he, we celebrate that as ne great, like, you know? Yeah. So, or even the fact he would've found school to be very difficult, but he's now in his special class, in our local, one of our local schools. And he's, he's really running into school every day. And that just gives us such great joy to see that. So within his own little world, he has his own little world and he should have his own little world. It's not all about us either. So that, just to say that, to give people hope, it's very difficult when initially you think, oh my God. Yeah. You know, and, and, and it is, and it's okay to feel like that. It's, it's okay to go through those emotions. You have to go through them, yourself, very different for other parents, you know,
Speaker 1 00:30:13 And that though that falls on the health service really. Yeah. And just like, look, every parent can only do their best. And I think as you say, there, regardless of what supports that you're actually able to access, even though you should be able to access them all, you've given a lot of really, really good advice and a lot of really good resources that people can go and look at. And I'll put all of the links for those in the show notes. And at least parents can feel somewhat empowered. So they're not just sitting and waiting. They're actually able to support their child now and to try and enjoy today, as you said.
Speaker 2 00:30:55 And I think that's the most important thing we've tried to do as a group of parents is to empower our parents because you are very vulnerable when your child has, you know, has the difference, like having being autistic and, you know, you're fighting and you're battling all the time and that vulnerability is there. So if you do know and understand, you know, a little bit more about the service a little bit more about maybe from your child's education, you can work much more collaboratively with people. So it's to give people that opportunity to kind of empower themselves and, and kind of signposts where they can go to get information it's really important, you know? Um, and if you can't do it with, could you have a friend that might help you out, could somebody else advocate on your behalf? You know, can somebody else have, because sometimes it's difficult, again, as I said, people aren't sleeping and all the stuff that goes with that.
Speaker 1 00:31:48 And can I speak a little bit about, I don't wanna go into this obviously too much because you know, it's different in every area and I'm conscious that we people all over the country listening, but in Dublin, there is a particular lack of school places. And I know you have fought exceptionally hard along with everyone. You know, who's joined you in the involved autism dub six, six w campaign, and you've, you know, really made things happen. And seeing, I suppose you achieved that over the years, really it's horrific because you should be able to just parent your child. You shouldn't have to fight so hard, but you spoke there about collaboration. So I suppose, just to touch on collaboration with schools and getting the most out of maybe the school place you're in now, and obviously once that assessment has been done, potentially trying to find a school place for your child, you know, I suppose learning to negotiate the, the system a little bit. I know it's a huge topic. So it's really more just to, to point parents and maybe motivate parents to access any local networks they can to try and help, as you said, advocate for their child. Because very important thing is that every child has a right to an education in Ireland. And it should be an appropriate one because if it's not, you're not enabling the child, as we said earlier, to be the best version of themselves. So,
Speaker 2 00:33:24 Yeah, and appropriates one thing I suppose, but also local was very much about what we were about as well. And why is that? Because I'm born BR in this area and I went to my local school and so do my brothers. And so do I have all these friends from that? And we're very much part of the community as a family because of that. And it's just something, you know, and I would say this all the time, your child will become an adult. And if you want your child to be part of the community from the beginning. So our campaign was very much around this. So we have children who are well supported in their, in our fantastic local schools. And we have fantastic local schools. Um, but there was a cohort of children who needed and were recommended for special classes. And this is where the issue was.
Speaker 2 00:34:10 So there weren't enough of them. You would contact the national council, special education, you have a special education needs officer. And through them, you would work with them to try and find your child an appropriate school placement. But if there's nothing in your local schools, you more than likely are transported past your local schools to another area that does have classes. So it's very challenging. If you've got a two and a half year old, a three year old who needs early intervention, you're being told, well, there isn't a class here, which you can put your child in a taxi. Um, with some, they will have supervision in that taxi and off they'll go to that. Then when they go to primary school, then you have to try and find another place. And then that child goes off on a bus somewhere, and then they're in secondary school.
Speaker 2 00:34:57 So most people, when they have young children start off, maybe they might have a crash. They might have a child minder. Then they have their chy scheme. Then there might be a transition into the local primary school. Don't have to think about anything onto the secondary school. And then the last transition point is the point, you know, just finish the leaving cert and all, if your child gets to that stage, not every child is destined for that. Or again, it's about meeting the child there. So you're talking about transition points, but when you're have a child who has, uh, is autistic or might have, um, additional educational needs, trying to find that school place is very difficult and it's not the same. So we would be in a situation where we live, that the whole estate goes to a local school here. And unfortunately there's few of our children that can't because they haven't got a special class.
Speaker 2 00:35:44 And that means then we're not meeting ULA from down the road, having a chat at the gate and all that. So it's, it's all of that stuff. So that's why that's, this is important. And the other thing is that it's very important to those children are very well supported within those classes. And so are the teachers and the SNAs need very well trained and also that they have wraparound supports. So this is part of the fight for us as well, has been around that now because of our campaigning, there has been some change in the area, absolutely delighted about that. And a lot of that is because we've kept campaigning. Um, and there's a, there's been a number of things. And I, you know, we've had two big public meetings, kept campaigning all during COVID. It has been some amount of work and we're still at it because we want done properly and we're not finished yet, but it takes a lot of work.
Speaker 2 00:36:30 You have to be very determined, completely voluntary. And we've had to go to such an extent between we would've been in and outta the do every two minutes. And I mean that, and, and, you know, kept at it in the media on, you know, social media. Also, we were involved there in, we put a complaint into the OBU when our complaint and other complaints of parents, uh, triggered that ombudsman report that came out planned for places there. And we're actually, uh, featured in that. So, you know, we've done it in such a way, I suppose we've questioned the systems that are there. And in doing that, you're hopefully trying to change strategically what's happening as well. Not just class by class school, by school.
Speaker 1 00:37:09 I just can't imagine. And you just must be so completely exhausted by it all because parenting any child is absolutely exhausting. I can't imagine to have to fight for such basic rights. And what you said about belonging within your community is so important. And just to put another slant on that, the only way that we can move towards and accepting and diverse environment is to create one from the get go. And especially what we were speaking about earlier about the parental stress that's involved in advocating for your child, never mind just meeting their daily needs, which are a lot more demanding in many cases than any other child. And when you have a young baby, you accept those additional needs because you know that as your child gets older, the needs will ease and they'll become more independent. But I, I can only imagine that when you're not sure of when you're going to achieve little, little wins like you did today, you know, with your son and his coat, or over the last few weeks, it's just a much longer, longer sustained effort and TIR. So
Speaker 2 00:38:30 That's why you come back to the education piece. And that's why it's so important and independent skills and all those things that go, you know, talk about, you know, supports that are acquired across the lifespan. It's not just about the child, you know what I mean? So you have to think about that. Now there is moves like there's, um, strategy coming on board. So things are begin to happen as long as not everything's left on the shelf. We really want to make sure that these things happen. But as a parent, I think, you know, it is very tiring and I'm not going to say it's not, it is. And I would also work part-time, you know, there's, there's a couple there, you know, you'll find that one of the couple might not be working because maybe they've other, they can't manage it's too much or had to give up their career that often happens. But, and then I suppose if you're parenting alone, then it's up another, or not for parents again, if they have to manage that themselves. So, you know, if you have the support for partner and, and one of you, isn't able to kind of manage to be in employment because you actually need to be at home because of your child's level of need. That's happens quite a lot. And that's what we've seen quite a lot.
Speaker 1 00:39:31 And it's very isolating as well.
Speaker 2 00:39:33 Um, and financially can be difficult then if you've made that to make that decision, do you know what I mean? So it's, it's a kind of there's layers and layers and layers upon it. You know,
Speaker 1 00:39:42 You've spoken a lot about how parents can support their autistic child. How can the community support families who have an autistic child?
Speaker 2 00:39:53 I think it is really to kind of begin to understand you, you can't be in anybody else's shoes, you can't, and your lived experience, but it's to support them. And it could be like, I joined our parents association in school and they've been so supportive of me and our campaign and everything. So really, and they wouldn't have known about that beforehand. And lots of people just don't know, because it hasn't crossed their paths. Now there's lots of things going on within the supports, you know, like local sports clubs are doing stuff. And that's great. That's a great way of be getting, um, more involved there from a community's perspective. I suppose it's really about education, I think. And also, I think we had quite a charity model when it came to disability before. So it was like, oh, God loves them. You know what I mean?
Speaker 2 00:40:39 But I don't want them to say, God loves my child because he's my child. And really it's yes, things are, can be difficult, but like, how can we make this better? How can we include them in the community? So you might be in a class situation and you have to often hear that children who are autistic might not be invited to birthday parties. And that doesn't happen all the time. So it could be that people are fearful and don't know what to do, or dunno what to ask them, but maybe give people permission to ask you and say, well, look, um, listen, I'm bringing them for an hour. Can you tell me where you're going? Uh, listen, I'll be outside or I'll stay with them. Is that okay with you? And you negotiate around it. So that could be quite isolating if people don't include you.
Speaker 2 00:41:18 And I think it could be because they don't know how to include you. You know? So don't be aggrieved or don't be put off and somebody just doesn't know what to do because genuinely they might not know what to do. And that's okay because it's just in any other thing, you know, we don't always know what the other person is going through. So, so just as a parent, uh, parent to parent, don't be afraid to say, look, you're having a bad day. Is there anything I could do to support? Is there anything I could do to help out? Just let me know, and I'm not going to intrude upon that. You know what I mean? You can save nicely. And then it's the education piece around what, as we're talking about, what is autism and how can I support them? And as I said, every child is different though. So it's that negotiation piece and that negotiation with other people.
Speaker 1 00:42:04 And I hope parents, neurotypical children listen today because you've made it a lot more clear. I think even for me, most people do want to help. They just don't know how a tough question. Now, what would you say Miriam has been the hardest part of parenting, an autistic child for you?
Speaker 2 00:42:27 So I think the lack of support, and I think that, and, and fighting for his education and that has been the most difficult part for us. Um, really, and having to do something like this and having to set up an advocacy group and having to be that voice. Um, when, when it looks like on paper, everything is there and that has been the most difficult piece. And I think also the worry then when your child isn't in an appropriate school placement, even though he's phenomenal support in his schools. And I would always say that, and they were fantastic, the environment just wasn't right for him, you know, he needed the extra support again. And hopefully things might get a bit better, but you're going to be worrying again now about secondary school and what's gonna happen there. You know? So for us, I think it's been that battle and that constant battle and having to raise our voices and having hoping that you're going to be heard, uh, and trying to change the system, trying to say, look, can we start asking questions here?
Speaker 2 00:43:26 Can we start politically not thinking, you know, looking at this politically, this is about a child. These are about children. This is about children's future. You know, and let's start looking at that. And I suppose the other thing would be is our son when maybe he is, maybe he's sick and he can't tell you what he's sick or, um, he can't communicate that to you, or then if he's distressed and you're not quite sure what that is about. And that is very upsetting, cuz it's terrible to think the child can't say, listen, I have a headache and I'm, I'm IM not feeling well. And then you might be saying, well, God, he's fine. What's wrong him. And then all of a sudden he's sick and you're going, oh my God, I didn't realize that he wasn't. Well, I find that difficult. And apart from being involved in education, I'm, I'm, I'm an ex nurse as well. And I find that really difficult that I can't know when I would've known, I know what to do kind of thing. Be very practical kind of person, right. What we need to do next, you know?
Speaker 1 00:44:22 Yeah. I think it's really important that I hope on some level, if there's anyone from the powers that beacon that can hear now, the fact that the most difficult part of parenting an autistic child is not the autism. It is the lack of support and services is absolutely horrendous and unacceptable.
Speaker 2 00:44:41 Uh, I think a lot of parents have been through so much they've nearly got, um, and I mean that, and I think there, isn't an, an understanding like I've had lots of stressful times in my life, uh, for various different things, but this has been the worst stress I have ever come across in my life. And I find that very difficult and I, I can't believe that parents are being put under that kind of level of stress. So that stress also leads to difficulties with, you know, mental health, you know, physical health, you know, that level of stress and you, and there's lots written around that as well. And I think there should, there has to be acknowledgement around that that the caregivers need support and I mean need psychological support. They need counseling, they need support and you, you can't just keep open that they're just going to be all. Okay. Because you will hear all the time that people really do find that stressful. I think it's really important that that's acknowledged, you know, and I think that the supports are needed for parents.
Speaker 1 00:45:40 Yeah. And even <laugh> looking at it from a HSC perspective in terms of, I suppose, economics, you're allowing hundreds and hundreds and hundreds of people be exasperated to the point of needing potentially medical intervention for their mental health and physical health as a result of ignoring a problem like,
Speaker 2 00:46:03 And also for the autistic person, um, there's research around the fact of the cost to the state around not having supports earlier on, you have to play the long game here. You have to provide supports early on so that you can give the building blocks. So to help the child or to become the adult and the adult, who's got the potential to be the best, as you said, the best, um, version of themselves, whatever that is, you know, and enable them to be that
Speaker 1 00:46:28 The best part of parenting in general, <laugh>
Speaker 2 00:46:33 The best part of parenting, I suppose for us is you were talking, our, our son is very affectionate. He's learned, I suppose he wouldn't have hugged before, but he does hug you now. And he goes, I, I want to give you a kiss and a hug. And that to me just means everything. The me would start crying because we would be, as you know, he just is very gentle and he's very kind, you know, my husband's very gentle as well. And it's, it's, it's his way of wanting like every morning he'll come up when he wants to give you a kiss and a hug and a long time he didn't do that. And he wouldn't do that. He found that very difficult. So that's a great joy for me at the moment. Now I dunno, much more app. He's going to be, he's getting older, but you know, I'll take it as it is. So if he comes in for a cuddle in the morning or he also loves books, now he is reading as he's coming along. But he, he loves books and he loves to be read too. And like he's learned off books and he quotes Julia Don books all day. Like, so some days you kind of go or where did that come from? I can't remember. I can't believe he's remembered that. So I find that like, he just loves listening to those kind of things. You know
Speaker 1 00:47:39 What the lady bird heard on repeat?
Speaker 2 00:47:41 Well, I can, he can tell you every word to that. That's
Speaker 1 00:47:44 My favorite one. I love that.
Speaker 2 00:47:45 Yeah. Yeah. The smartest giant in town. Yeah. Yeah. And yeah, I'm full of frolics of FIDS. You know what I mean? So, but isn't that great, but that he won't be, but he can't have a conversation with you. Yeah. So there's no functional conversation. He can't come home say, this is what I did in school today. There's none of that, but he can have these other, so it's just interesting. Yeah. The way the mind works very differently. And, and that's, that's what amazes me really, you know, we were, he was watching Thomas, the tank engine there and we're going, what the hell is he doing? All of a sudden he was singing all these Thomas, the tank engines songs, and we just thought he was flicking through the TV. So you just, I suppose, you know, they will surprise you all the time
Speaker 1 00:48:20 Then, you know, he's enjoying enjoying it. Yeah. And
Speaker 2 00:48:23 That's what he likes. And he is quite happy to be, you know, repeating and sometimes you gotta go, oh my God, he just said that again. But like, isn't it great that he's doing that. And, and he can't take that away from, so we just leave him off. Like, you know what I mean? And he's going around all day singing at the moment, which he used him to do. So he is very happy. And part of that happiness is he's really happy in school. And I suppose two years they missed out COVID, he'd gone into a special class, which you were delighted about, but he missed part of that. Yeah. And then he transitioned to another school in, on the same side. So he's really happy. And, and that's what that is. He's singing every day and he's here and he's kind of come back into hisself a bit. So that's just been really, really joyous for us that he's happy. Nevermind us. It's not all about us. It's about him. You know what I mean?
Speaker 1 00:49:10 Well, I am very happy to hear that he's getting such joy in life and a happy child. Okay. I was gonna say makes a happy mommy, but my children are happy a lot and I'm not sure I'm always happy <laugh> but I'm so glad to hear that he is having good times and good moments. And I hope you continue to be able to enjoy them in the now, as we spoke about earlier, thank you so much for coming and educating me and hopefully can more people feel confident to reach out and support as is so important in our communities. Lovely to chat to you. Thanks very much.
Speaker 2 00:49:49 No problem. Thank you.
