Podcast Episode 19. You need to be brave and a bit terrified at the same time when it comes to building independence skills, according to Robyn in the second part of her son’s story. The key is to not underestimate our children and what they can do, but you will always struggle with your own fears when letting them be more independent.
Robyn offers some practical insights into how they have taught Riley travel skills, relying on the mobile phone as the crutch on which he leans so he can go off on his own while still having support available if he needs it. These initial short journeys with purpose have provided him with growing confidence to venture farther away from home.
Robyn also talks about how friendships remain a challenge for Riley, as they do for many children with additional needs. It is Riley, though, who provides us with a genuinely enlightened way of looking at the fact he is yet to find the friendships he desires. According to him, it’s because he hasn’t yet found his wolf pack.
Robyn reminds us that to be brave is also to be terrified but still having the courage to do it anyway. She reminds us also as that as parents we need to let go of our children (albeit slowly and reluctantly) regardless of any additional need so that one day they will be able to let go of us when the time is right for them. Don’t ever confuse slow with never, everything takes the time it takes.
[1.30] – How the mobile phone helps facilitate independence
[2.10] – Never underestimate your child and always stretch them where you can
[3.25] – Your only a phone call away
[4.20] – Building travel skills
[7.00] – Finding your wolf pack
[8.10] – Maybe it’s a boy thing
[11.00] – A glimpse into the future
[12.50] – What would you tell yourself if you could go back in time?
[13.50] – Slow does not mean never ‘He can swing”
[15.00] – Brave doesn’t mean not being frightened
Be brave and let go
DEBRA: This week is the second part of my interview with Robyn from Sydney. Last week, she talked about getting Riley’s diagnosis and his school years. And she also talked about how some of the people she dealt with just didn’t seem to see in her son what she, her husband and their family saw which forced her to get her cranky pants on. This week, we moved to talking more about Riley’s independent skills and how they help him develop those. And if you’re a bit like me and struggle with the whole idea of marrying independence and keeping your child safe then Robyn’s story will probably resonate with you as it did for me.
She also touches on travel and cooking skills and offers I think some really practical ideas for building skills in both these areas. We also talked about friendships. It will not surprise anyone this thing I’m sure that like most young people with additional needs, he struggles in this area but I think Riley may have found the ideal metaphor around finding friends when he talks about finding his wolf pack. For those of us who have children who do not naturally make friends, maybe this is the way of looking at things; that one day they will find their own wolf pack.
I think Robyn also reminds us that we need to remember that before anything else, our children are children not the additional need then the child. As she says, she has a son with autism, not an autistic son. Why does this matter? Well I think it’s often quite easy to feel that everything that happens is about the additional needs your child has. Robyn reminded me that actually maybe I’m guilty of describing my daughter’s behavior 100% to her additional needs, when in fact, it could be just as she’s a teenager and acting like a normal teenager and maybe I might need to deal with the situation with that information in mind.
DEBRA: What do you do to help him with his independence, what kind of things can you do and what he struggles with?
ROBYN: He’s actually very independent and I think that the first thing is that he spends a lot of time with his younger brother. And I sent them on little errands together. Pop up to the butchers and go and get me the mints which is about 5-10-minute walk. And then, he can go up and do that himself. He does it with his brother but he can go up and do it on his own now. He can catch a bus to and from school which he does, he’s been doing that on his own for 2 years now. And the way that we’ve been able to do that is my ball firing.
Mobile phone has been such an independent thing for him. When he left primary school, I sat and had a meeting with his principal who was very supportive and I said “Do you have any advice for me to take forward?” and she said to me, “Never underestimate him. That if you’ve got a choice between two things, one is to be overprotective and one is to be a little bit underprotective and just stretching, always stretching. He will always surprise you. And never underestimate him, never underestimate any child. Don’t put them in danger situations. But if you’re a little bit frightened or a little bit scared, be brave.” And so, there’s so many times I go “I’m a bit scared now” but the mobile phone has been incredibly powerful so he knows how to use his phone and you know he’ll often ring me several times a day when I’m at work and I said “Riley, I’m at work today, please don’t call me” but he’ll ring me and that’s fine. I’m happy with that.
DEBRA: Is that just because he feels in a situation that he needs to hear your voice?
ROBYN: He has ring me the panic once and that was my fault because I told him the wrong bus number to get on and he ended up at the wrong place.
DEBRA: When he rings you, is it just sign of keeping you…?
ROBYN: Sometimes it’s just touching base about what happened at school. So, the mobile phone coupled with me and my husband learning to be brave has been great. Teaching him with the mobile phone that if he’s stuck or if his lost or if he does to feel panic, you’re only a phone call away and there’s multiple phone numbers in there so if he can’t get me, he can get dad, he can get granddad, he can get nana, he can get Max, his younger brother. That’s one thing. So, once we taught him that then we can start of let him “Go look down to the park and when you get there, give me a phone call. And when you get half way back, ring me half way there or as you’re walking along, talk to me on the phone while you walk down to the park and then talk to me as you come back”. And then sort of do like a debrief session.
DEBRA: That’s how you build up his skills…?
ROBYN: Realistically, it was his confidence and my confidence was relatively easy and he was keen to do that, he wanted to do that. So, when he is asking to do those types of things, that’s when it’s easy because it’s only really my fear that I’m dealing with.
DEBRA: So, has he taken that on to other buses or you said it was just a school bus?
ROBYN: Yes, he hasn’t gone on to other buses but he has done trains and we live quite close to a train station and we know a guy who makes really yummy chocolate which is just one station away from us so he uses his student pass so he understands how to use that on the school bus. So the next week, we went on a trip on the train, I showed him how to tap on, showed him how to tap off, took him there, spoke to the chocolate guy. “Hey, let’s buy some chocolate” then jump to the train and come home. Then the next week he goes, “Hey mama, wanna go ge some chocolate?” and I say “Okay mate, off you go, take your phone. Do you want me to come with you?” “No, no. I think I can go on my own”. I said, “Great! Okay, off you go.” So off he went, taps on, up to the local station, go and grabs the chocolate.
The challenge was he had to sit and wait for the next train to come because it was going to be quite a while. He didn’t wait. He just walked home on his own. I’m like, “Okay, you found your own way home. That’s great!” Scary but he did it. And I said, “Oh, you walked home!” And he said, “Mum, I was sitting there for ages and the train didn’t come so I walked. It’s okay, mum, because I know if I get lost, I got my phone.”
DEBRA: You mentioned before about the fact he has empathy, how’s his friendships?
ROBYN: He has always desperately wanted very close friends and he has yet to actually develop a really close friendship. When I say close friendship, I mean one way somebody else is calling him saying “Hey Riley, what you doing? Let’s go out.” He gets invited to birthday parties where it’s kind of like “Hey I’m turning 13 and I’m going to invite the whole year.” He gets invited to those types of things. Very rarely, maybe twice he’s had kids contact him and say “Hey would you like to come over after school?” But he finds that really difficult to get to that next layer and I struggle in trying to help him with that.
He only said to me 2 or 3 times, “Do you think I’ve got friends?” and I said, “Oh, what do you mean by that?” and he said “Well, I sent texts to… and they don’t respond back, mum.” And I’m like, “Maybe they’re not the ones that you should go for.” So, the discussion forth kind of more on the friendship that he has with his younger brother which we try very hard not to make his younger brother feel responsible for him. And today I said to Max, “You’re going out with your mates today?” “Yes, I’m going out. Do you think Riley would like to come too?” I said, “Well only if you think that that’s going to be cool.” “Yes, Riley’s cool. My mates like him.” Because Riley seems to be always the tag-along.
DEBRA: Do you think that that’s just something he’ll develop those skills?
ROBYN: I think he actually has the skills; he just hasn’t found the person. That sounds really strange but because he has empathy, he does understand how the people feel and he is interested in listening to what other people have to say. He’ll talk about whatever he’s interested in, but he understands those types of things. But I just don’t think he’s found his… (well he didn’t say that because he loves animals, he adores animals and he said) “Mum, I just feel I haven’t found my wolf pack yet.”
DEBRA: That’s so really nice.
ROBYN: And that’s a really nice way. As I said, he has a really unusual way of looking at the world, so he doesn’t feel upset. He just talks about something that he’s looking forward to happening, not something that will never happen. So, he’s not disillusion boy and I think it comes back to him being happy at school. So, for example, this school holidays, I had a whole lot of phone numbers of his mates and parents of his mates and I send out a message to either of them and said “Hey, what are you guys doing? Riley wants to go and see a movie.” Did they want to do it. 7 of them came back and said “Yes, let’s do it.” Off they went, I dropped them at the movies, they went to the movies, many of them went down, bought lunch, came back up at the movie, and then I picked them up again. So, again that kind of independence within a group.
DEBRA: Does he send them messages like that or does that left up to you?
ROBYN: I don’t know if that’s a boy thing. Because I don’t see that happening with my younger son, either. He’d say, “I’m bored”, I’m like “Why don’t you call your friends?” “Ahh, you’re right” And then 3 days later, “I’m bored” Like “Have you called them?” I don’t know! Because Riley’s my eldest, I don’t know how much of that is….
DEBRA: So, it’s less about his additional needs and more about the fact that he’s just an average boy.
ROBYN: Well back to the whole thing of he’s not autistic, he’s a child with autism. The thing that I find that I’m learning every day is that all these things that I used to buy him autism for him “I hate that autism, autism’s horrible.” I realized it’s not autism, it’s just children. Because then my younger child would do it and there’s no way, he has autism. And I’m like “Ahh, maybe that’s just what they do at that age!”.
In the early days, there was an awful lot of anger and frustration definitely from my perspective. Huge amount of anger and frustration and not wanting to accept that this is the child that I have and now I turn around and just go watching him now. He was just being 5. He was just being 6. He was just being 9. Because now, I’ve got miss the 12 doing what Riley was doing when he was 12.
DEBRA: So, he’s 15 and a half, you had to sort of look forward and say 5 years’ time, where would you like him to be?
ROBYN: He already got his own vision about where he wants to be. He’s quite, (not cemented but) he’s quite set with his life. He wants to be married when he’s 20. And I’m like “Okay.” He has had one girlfriend, so that was an interesting for the experience.
DEBRA: Can we talk about that?
DEBRA: Did he intiatite the girlfriend? Did he ask the girl?
ROBYN: That was day one, at high school, at the bus, waiting for the bus, his first bus trip. And there was a girl there, crying. And he went up to her and said, “Oh, are you okay?” And she was like “Nobody likes me, I haven’t got any friends and at the year 6’s dance, nobody asked me to dance.” And he said (as he does because he’s so honest) “I don’t know why they didn’t ask you to dance, you’re such a pretty girl.” It was about a month; they were hanging out a lot and then they realize that they don’t really have that much in common. But they’re still friends. Then she just lives around and he has now a girlfriend, he has decided that he wants to have a unit at Cronellla which is on the beach, as you do, with a dog because we recently just got a dog. But he wants a dog, a great thing. In this unit at Cronella, with a job and a wife and he can go walk the dog everyday down at Cronella beach. He can run the dog along the beach and he’s going to live his life like. That’s what he wants!
DEBRA: Has he got a job?
ROBYN: He hasn’t decided what sort of job. He loves to make things, he builds things. So, he knows how to use tools, he’s good at visual arts. I’d like to see him with a trade or some sort. Because he still got a lot of sensory issues, he’s very good at regulating himself, so he does a lot of exercise himself. He takes the dog for a run himself now that we have the dog. So, either going down that trade group or even something with animals. So, whether being pet groomer or something along those lines. He’s not gonna go to university and it’s not going to give him what he wants. He likes to do things very practically.
DEBRA: Do you think that you can see him living independently by himself?
ROBYN: Yes, I actually can. I actually can and it does scare me, it does scare me.
DEBRA: In what way?
ROBYN: Depends on the housemates that he’s hanging out with, really, doesn’t it?
Yes, again it comes back to Is this a fear of him because he has special needs? Or just a normal feel that a mother has when her child talks about moving out of home? I can see him moving out of home, I don’t think he would ever move far away though. He sees family as very important as well.
DEBRA: Does he do some sort of cooking and like things like that himself?
ROBYN: Yes, because he loves food. Teenage boys love food. He makes his own lunch. I showed him how to make his lunch, taught him how to do it, just simply making sure that the stuff are on the same place in the fridge. He’s gluten-free so he spreads top left. So just making sure that we always put the things in the same place so he knows which ones are his. I think now if it was mixed up, he’d be fine but when he was starting, just making it easy for him. So once he has learned to do something, it’s fine. But it’s getting through that brick wall of breaking it through. Once you breakthrough, it’s there.
DEBRA: Just to finish up, if you had to give other parents some top tips, I mean I think you’ve talked before about looking forward, but is there other things as a parent… (you mentioned to me before we started the interview about using this stuff and look back and think “Wish I told myself this when I had his diagnosis..”) what are some of the top tips that you’ve got?
ROBYN: Okay. I think I write few things down. If I was to meet with myself as I walked out that of that doctor’s surgery and I’ve been given the diagnosis, the things that I would say and I think I’ve covered them off, so first of all, he’s not autistic and that’s not denial, that’s just putting it into context. He is a child with autism and child first. So that’s the first thing. The thinking I’ve got was never underestimate a child, any child, but definitely never underestimate a child with additional needs. They may have additional needs but they will surprise you and they will delight you.
Don’t waste time on why things happened, you need a 100% of your energy here and now. He doesn’t need fixing; he needs creative people who love him around him. Find people who love him or find people that can love him and surround him with that to build his confidence. Don’t find people that are dying to fix him, he just needs to be loved and cared for. Einstein utilized different parts of his brain. So find the people who love him will help him utilize that parts of his brain.
Understand that slow doesn’t always mean never. The example that I use there is that I used to take him to the park every single day to teach him to swing on a swing when he was 3. And I would come home and I would cry and sob because he couldn’t swing. Right up until he was 8 or 9 or 10. Four weeks ago, he went to the hairdresser, so he’s 15, and he had his hair cut and he was waiting outside in the park and I looked out there and he was swinging on the swing. I just sobbed!! Unfortunately, my hairdresser is a close friend and she was like “He’s swinging!!! He’s having a great time!!” It doesn’t mean never. It just means slow. Just means slow.
Sell your child, not on ebay. Sell your child. Find out, sit down and really be analytical about what are the good things. They may seem miniscule but they’re going to be huge to people who love him. So if you surround him with people who care and are creative, you find those small things that he’s good at and you can grow those small things and then it becomes a big thing. Finally, be brave. Brave doesn’t mean not being frightened. Brave means being terrified and doing it anyway. And I think that that’s what I would tell myself.
DEBRA: Robyn, thank you very much for your time and your wonderful insight.
ROBYN: You are most welcome, Debra. Thank you for your time.
DEBRA: Key takeaways this week? Well let’s face it, there’s not a lot of point me repeating what Robyn has just said but I personally found the idea of being brave and I’m putting brackets around the word ‘terrified’ behind that and something identify with. I’m certainly struggling with the idea of letting my daughter go and I worry that she’s not ready for some of the things that she needs to be doing but honest I’m going to try a bit harder because I know I need to let my daughter go so that one day she can let me go when the time is right.
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