Essential Advocacy Tips for Parents of Neurodivergent Children with Greer Jones

In this week's episode of The Autism Mums Podcast we welcome Greer Jones to the show.

Biography

Greer Jones is a speaker, writer, and podcast host passionate about building understanding and connection in the neurodiverse world. As a mom raising an autistic and ADHD child, and part of a neurodivergent couple herself, she brings honesty, empathy, and lived experience to her work. She is the creator of The Unfinished Idea podcast and online community, where she provides encouragement, practical tools, and a reminder that no one has to walk this journey alone. Her story has been featured in podcasts, conferences, and publications, inspiring families to embrace their unique path with hope and courage.

Key Takeaways

• Understanding Neurodiversity: Greer emphasises that autism and ADHD manifest differently in each individual, highlighting the importance of recognising and valuing each child's unique strengths and challenges.
• Advocacy Experience: Greer shares her experience of advocating for her son, stressing the need for parents to be proactive in navigating educational and healthcare systems.
• Building Community: Connecting with other parents and families facing similar challenges can provide invaluable support, encouragement, and shared strategies for managing daily life.
• Positive Framing: Starting meetings with positive affirmations about a child helps shift the focus from deficits to strengths, fostering a more collaborative atmosphere.
• Partnership with Schools: Greer advocates for a partnership approach with educators, emphasising the importance of regular communication and collaboration to support a child's needs effectively.
• Managing Expectations: Understanding that neurodivergent children may struggle with transitions and choices allows parents to adjust their expectations and provide necessary support.
• Embracing Flexibility: Greer discusses the importance of adapting plans and routines according to a child's needs, especially during challenging periods, to minimise overwhelm.
• Creating Safe Spaces: Providing children with tools and strategies, such as sensory items or designated "fun bags," can help them navigate overwhelming situations more comfortably.

Mentioned in This Episode

The Unfinished Idea Podcast with Greer Jones

Connect with Greer

Website – http://theunfinishedidea.com

Instagram - https://www.instagram.com/theunfinishedidea/

Connect with The Autism Mums

Website – https://theautismmums.com/

Follow us on Instagram https://www.instagram.com/theautismmums

Follow us on Facebook https://www.facebook.com/theautismmums

Follow us on TikTok https://www.tiktok.com/@theautismmums

Transcript

Victoria Bennion: Welcome to the podcast.

Greer Jones: Thank you. Yeah. Thanks for having me. , I'm glad to be here.

Victoria Bennion: It's great to have the chance to talk to you after meeting you at the Send Rally

Greer Jones: Yeah, it was fun. I found that really just be really impactful because I got to meet so many people in person that I know online and have seen online. So yeah, it was good.

Natalie Tealdi: Can you start by [00:02:00] telling us what your family's journey through diagnosis has taught you about resilience and hope?

Greer Jones: Yeah, that's a great question. So just a little bit about me. I have a son who's autistic, A DHD. I'm married to someone who is autistic, and then I have a DHD. And then I have another son who, we don't know where he's at. He's only three, so it's,

Natalie Tealdi: Early days.

Greer Jones: Yeah. Early days. Yeah. I definitely think there's maybe some sensory processing, but I don't know if that's added into anything so really our journey started when our oldest son, who is autistic, A DHD, was two. And we were just coming outta the pandemic and we were just realizing that. He was processing and receiving the world differently and along with his speech being delayed. And so we were trying to really pursue that.

And in the process, kinda asking questions like, oh, is this typical or is this not? 'Cause he'd hit all of his kind of milestone markers, he could say mama and dad, but he couldn't say anything really beyond that. [00:03:00] But he could count, he could say numbers, which.

It's like I look back and I'm like, yes, this makes all sense. But like at the time I was like, how can you count to 20 when you're two, but not say fridge, or not say milk or like those kind of we call basic word words.

Whereas now I'm like, oh, this all makes sense.

My first conversation actually with the GP was particularly more around his speech, but he basically said that my child's speech delay and while he was processing the world differently was because I'm American. To which I said very quickly. Nice try. Tell me something else. , I thought may, maybe if it's a different, completely different language where I'm like, American come on, that's silly. But anyways, so that was, I think maybe even our first little taste of what we were entering into of kind of even advocacy of people are going to try and tell you. Some people just aren't gonna know.

I think, to be honest, I think that GP didn't really know what he was talking about. . And two, they're gonna just try and [00:04:00] give you the lowest effort answer sometimes because

Victoria Bennion: So 

Greer Jones: that's, yeah. The, just where we are. And so we started pursuing other things.

In that time he then started going to nursery, which again, nursery, gave us the lowest possible effort. Answer. To the point where at one point they said to me I was gonna have to pay for his extra support, which I knew nothing like being American. I know nothing about the British system like nursery and all of that, was new school, all of that.

It was a very interesting and hard experience. So then we enter into school and I wanted to be really proactive. Having had not a great nursery experience, I wanted to be really proactive with the school and say here's strategies we like are working at home. We don't know where he is on the spectrum, but we definitely at this point know he's on the spectrum.

Can we work together? I very much am pro partnership of, wherever your school setting is. So just going through that and leaving that meeting. [00:05:00] So that was before he started. So this was like the July before he started in September and leaving that meeting feeling like they just thought I was an overprotective parent and thought I was crazy.

That was one. I think my first real moment, like looking back, I'm like, oh, these other moments were probably. Part of our story, but of when I was like, I am my child's voice,, they did not hear me. This is not okay.

So from that meeting, they said, give it a week. When he starts school, we'll set in some support, see how he does, blah, blah. Week, day two, of starting school, I got the call that said that they were not able to support my child's needs. That he needed to come in for an hour a day. Which turned into two hours because I was like, I'm not coming for an hour.

What am I supposed to do? And how it was set up was not legal. And realizing again, the conversations that needed to be had and who with weren't. And so again, trying to align like. For example, in the US you speak to the class teacher, that's your point of call.

If there's any other people you need to speak to, she'll [00:06:00] make the reference whereas at our school, , the class teacher didn't wanna talk to us. They were referencing us to someone else quite quickly. And I was like, who is this person?, It was just a very weird experience.

So partly I think because of learning the school system, but also just learning that after getting that phone call of you need to come get your child, he can only do this, blah, blah, blah. And , that first six weeks I learned a lot and realized a lot that people dunno the law, that was the biggest thing.

And that people are, because they dunno the law, they are going to also not look at the child, but look at the whole. Which again, it's not wrong. I'm not saying that's necessarily a bad thing, but. You. That means the child then gets lost. I think that, at least in our instance, and so it is. From that, I just started sharing, I sh started sharing our experience and going, this is what it's like to get him to school.

This is the fact that he's only going for two hours and I have had to take work off. I've had work was quite good. They, in the end, we're quite flexible with my time., But [00:07:00] there's some people I know who wouldn't, you know, who wouldn't be able to, and just like different things that we had to work around.

And it was when I started sharing that, people were like, oh yeah, we've gone through that. Or we know what it's like to battle getting their shoes on. And it be more than just a kind of. They don't want to. But a true battle of getting shoes on or clothes on. My child loves to be naked.

So it was through that I found a community and I was able to see that kind of hope? I guess that, going back to your original question, of just that there are people out here who get it and there's hope that I am not one alone in this, and two, there are people who are ahead of me who can share their experiences and there's people walking with me who can, cheer me on and say, I'm going through this with you.

And then people behind me who I can share my experience with and help. Their journey as well and just that kind of, yeah, just knowing I'm not alone has brought so much hope and so much clarity because of having those [00:08:00] sources of people who can offer support or help, who've gone, who are a few years ahead in their journey.

Victoria Bennion: It's so important, isn't it? That's my experience too, of those people that are ahead of you who can help support you because it's such a lonely place when that starts to happen and your child is struggling so much. I remember Going in late because of all those problems that you talked about.

And then I had one day and I realized actually I'm not the only one. There's a couple of other parents in the playground who are having struggles and just having other people who understand when, yeah, it means a lot.

Greer Jones: The end dish of reception, beginning of year one, I went to our SENDCo and said, statistically there are other moms like me. 'Cause at this point I hadn't met anyone at school who was raising a child with additional needs. I met a few who went to other schools around, or online, but not at our school.

And so I went to our SENDCo and was like, okay, statistically there are other kids. My son, which means there's parents like me, I wanna meet [00:09:00] them. How can I do that? And her first response was very sweet, very GDPR was like, I can't just give you names. And I was like no. Like I don't do that. That's weird.

That'd be weird as well. Me just emailing someone, being like, let's be friends. And so we set up a coffee morning for, parents. It was open to any parents of children, like SEN children. But only moms came, which I'm glad about, because that's who I was wanting to really meet.

Because we know moms are the ones who do a lot more of the advocating and have the different schedules. Not saying all, but for the most part. From there I set up a WhatsApp group and was like, let's chat and be on WhatsApp together. And we just encourage each other every so often start of school we were like, okay, what are we doing to prepare our kids for school and what are we doing that? And just knowing there's a group of people who I can text and be like, we made it to school on time. Or My kid has both shoes on today instead of one.

'cause there are times where he has walked into school with one shoe on [00:10:00] the other, one in his hand, but he has walked in 'cause he didn't wanna wear it. 

Natalie Tealdi: Yeah, mine's in wellies and no socks today, 

Greer Jones: yeah. Yeah. And it's what's interesting as well, this is a side note, sorry, but is the last, particularly year one, so he's now in year two.

I did a lot of educating the school, which I was really shocked to buy. Not necessarily the cinco seemed to know, but for example, this is a very vulnerable moment, but, the school called Child Services on us because my child came in with no socks on every day. And they were concerned why he wasn't coming in with socks.

Which one? I was like, could you not have asked me? And I would've told you, feel like he. Jumped the gun on that. But anyways, and Charles sources came and were like, this is, yeah, you're fine. Totally. It was like totally fine, totally resolved. But it was really interesting to be like, okay 'cause they had a conversation with our son and he was like saying how he made up this massive story basically about how we don't believe in socks [00:11:00] and we go we go to a cult.

Like it was just like this big thing. And of course I want 'em to believe the child. So part of me was like, okay, I'm glad you believed him. But at the same time, talk to him for five minutes and you'll see like he makes up these crazy stories.

That's how his brain works and and it is just a really interesting thing, last year, I just very much felt like I was having conversations with the head of okay, so children who have a DHD, like these are common signs. This is the fact that he's told you like for one of the other concerns they had was 'cause he said apparently he hadn't eaten for 18 days.

Natalie Tealdi: Oh 

Greer Jones: I was like, okay. First off, you would know, he would tell like one, he comes to school and eats and he's fine. And two there'd be other signs. I was just like, okay, there's just other signs. I was like, okay, this is weird. Why would you truly not believe that?

It's just things like that, and he just loves to make up big stories 'cause that's in his mind very true

Victoria Bennion: It does make sense. It 

does. 

Greer Jones: and I, I think this [00:12:00] year. Having had a whole year of trying to educate the school of what it's like, I'm hoping this year will be different.

And we can set into more of a routine and like ease,

Natalie Tealdi: Is he in mainstream school?

Greer Jones: Yeah. I always put massive. Asterisk though. So his whole year group is only 30 kids. He's in a school where they have two year, two classes for every year group. So , yes, he is in a mainstream school, but he's in a class that has 17 max kids.

They do a bit of crossover between the two classes. They do. Teach a little bit together. So maybe at times there'll be 30 kids, but that'll only be for core teaching and then they'll go into their kind of groups so yes, he is in mainstream, but I big asterisk of, it's not really a mainstream school.

He finds noise to be very overwhelming if he were to sit in a classroom of 30 kids all day, he wouldn't cope as much as he can cope now. And the other, big thing for us is we always [00:13:00] say, we just take it term by term

and see.

So if he's not having a great term then we'll say, okay, we don't do a whole year because a whole year is a long time for a child.

Victoria Bennion: Yeah.

that's it. You can keep it under review, can't you?

Greer Jones: Yeah. Yeah. And it's just also for us, we've just set that rhythm, I set every meeting out, whenever I have a meeting with the school saying, I wanna be in partnership with you.

And so partnership means you have touchpoints. And so we have touch points a lot more than just once a term. We will meet at least once a term so we can hear back and meet with the teacher as well.

'cause that was something, again, I just found really strange that the teacher who he's having everyday contact with would send emails or give reports to the synco, but wasn't always there to be part of the conversation, which I recognize they have a lot of demands. I'm not saying they're not busy people, but I just sound really hard.

I've set it up so that. At least once a term, the teacher, Luko and I, always meet together,

Natalie Tealdi: Yeah, 

Greer Jones: and have a [00:14:00] conversation of what's actually working, what's not,

What's he been through this last term, basically, and

Natalie Tealdi: Yeah. 

Greer Jones: What's coming up? I think that's something that, always helps as well.

'cause we find if we can talk about things ahead of time, he's less anxious and then therefore not. He's not gonna act out 'cause he can know what to expect, which most kids like,

Victoria Bennion: Does he struggle at any particular times of year? I remember my son, he was in mainstream, Christmas was really hard, you know when they put all the decorations up and they've got the play and things like that going on.

Greer Jones: Yeah. So he actually struggles from Easter to the end of the year. I find it really interesting. I'm like, you're outside more. He loves being outside and naked. Those are his, two favorite things in the world. We've joked that he's gonna start a nudist colony, natural nudist colony, because he just, those are his two things.

He finds the end of the year hard, but I think it's partly because it's that one anticipation of what next year's going to be like, but also saying goodbye because he. [00:15:00] He does struggle with those. He struggles with those two things. He really struggles with saying goodbye to anything and everything.

He doesn't know what's gonna happen next, mixes that anxiousness. Even in nursery reception, year one, we've seen his, behavior. Change and just even to an extent he changes. I don't know if that makes sense.

You can tell he's holding in this anxiety, you can tell he's holding in this like nervousness. And so we find the needing to move a lot more is needed, end of a, like after Easter to the end of the year 

time, which we also last year, we decided to just not have any extra activities during that time.

Weekends, we had cricket. That was it. Which we found was good 'cause it's outside and he could move. We just tried to do very low demands,

Natalie Tealdi: Yeah.

Greer Jones: go with the flow. To help.

Victoria Bennion: Yeah, I think that's what we do too, on those tricky times. You just gotta take everything [00:16:00] else away, wouldn't you?

Natalie...