Podcast Episode 18. You need to focus forward 100%, and not waste your energy looking backwards, according to Robyn. Robyn lives in Sydney with her son Riley, his younger brother and her husband. She talks about the early years, finding out Riley has autism and how their family dealt with this news. As she says Riley is a child with autism rather than an autistic child, because before anything else Riley is a child.
Robyn talks about the challenges in finding the right school for Riley and how she and her family were determined he would have every opportunity available to him. As part of this they explored a variety of interventions including speech and language therapy.
Robyn advocates getting on your cranky pants when those in charge don’t respect the value of your child. She shows us there is a time for thought and a time for action. She also talks about the fact that your family, and most importantly your child, must stay the axis of the wheel so that everything works for them not for any preconceived ideas or system. Robyn reminds us that as parents/guardians we are our child’s greatest advocate and that our positivity will permeate throughout their lives helping them to achieve so much more than a system often expects of them.
[1.15] – All about Robyn and her son Riley
[1.40] – Getting the diagnosis
[3.40] – Child first autism second
[5.30] – Early intervention is missed
[6.50] – Pulling the cranky pants on
[8.15] – How great it is to be able to say ‘No thanks we’re fine’
[11.00] – Utilising the tools that Riley has and finding every resource available
[14.30] – Don’t try to fix what isn’t broken
[15.30] – Look forward 100% of the time
[16.15] – The support wheel with the family at the centre
[17.15] – Moving to mainstream schooling
[19.00] – Don’t worry – He’s my first too
Don’t think about fixing your child they’re are not broken they are unique
Focus 100% ahead not think about whats behind
DEBRA: Welcome to this week’s episode of the Journey Skills podcast. As I’m sure you’ve already figured out from my twang, I’m an Aussie who currently lives in the UK and recently I was lucky enough to go back home for a while and even more luckily, I found some fantastic people to talk to about their journey helping their young people with additional needs become more independent. And one of these people is Robyn who I’m sure after you hear what she has to say, you will definitely agree she very much has that super power of positivity.
She also has a fabulous term of phrase, hence, our title this week. So, although there’s a slight strain focus this week, the story’s pretty universal and the arise is relevant wherever you are in the world. This is also the first of a two part, so next week, we will hear from Robyn again, more about developing independence skills.
DEBRA: Welcome, Robyn.
ROBYN: Thank you. Thank you for having me.
DEBRA: Start with your journey, where are you now and tell us something about your son?
ROBYN: Okay. So, Riley’s now 15 and a half and he was diagnosed with ASD when he was 3 and a half, just after we had our second son, Max. So, we had little baby on board who wasn’t sleeping and a fabulously ASD child running across the bottom of our bed at four o’clock every morning. When he was just given his diagnosis, we were utterly gutted. I can’t describe how gutted we were. My husband, Darren looked he had been physically punched when the doctor gave him the diagnosis because we knew nothing, we knew absolutely nothing. And the way that it was delivered was, “Your son has autism and he’s never going to get better. You need to learn how to deal with that.” So, obviously we then changed doctors. We went away and I spent a significant amount of time standing in front of the mirror saying “My son has autism” because I couldn’t say the words to schools and all of us those types of things.
I think the key thing is that now at 15 and a half, he is a beautiful child. He’s a man, he’s a beautiful man and he constantly surprises me with the brilliance that he has. We’ve always believed he’s a beautiful child and the number one thing that I think we try to do is to sell him (I don’t mean sell him on ebay). I mean sell his positive things because when you have a child like this, everybody wants to talk about the bad stuff. They want to talk about What is his learning disability? What support does he need? What kind of schooling does he need? Oh, he can’t do this and he can’t do that.
No other child, not parent has to go through talking about all these negative stuff except for parents that have got these kids, that got have challenges or additional needs. I think that’s incredibly unfair.
So we made a decision early on that we were going to sing the positives of our son and we have luckily been successful in making relationships with those professionals; speech pathologists, OT, schools, who are happy to sing his praises too. And that doesn’t mean we’re blinded and we pretended, it’s not happening. But it means that for us, we and the people that we work with, he’s not autistic, he’s a child with autism. Child first, autism second.
DEBRA: Did you have to talk to the professionals and say “Look, we’re not going to put up with negativity” or did that just come because of your positivity, do you think?
ROBYN: I never have to have a formal discussion. I think, so for example with the schooling when we were looking at primary schools, and our local public school, we went in and we said “These are the challenges that he has, but these are the positive things; he’s incredibly funny, he’s quite social, he’s not violent.” He’s a well-liked kid, he has challenges in making deeper friendships but he’s well-watched, generally. He walks into the playground “Hi, Riley. Hi, Riley” but he doesn’t have anyone that he’s a close friendship. So that’s a challenge that we have. But the good thing is that he’s a well-liked kid. And he’s incredibly creative, too. He makes amazing things and draw. So, he has got very strong positives.
When we went to our local public school, the response from the principal there was “Well I guess we have to take him because he falls in area.” “Yes, I’d love you to look after my son.” We went to the public school that was next in the next area over and to the principal, we talked to her about some of the challenges and at the end of the meeting, she said “I think that having a child, certainly having Riley in our class would really add a lovely dimension to our school.” It was a small school and there was only 4 classes across the whole school and she was instrumental in her attitude towards him flow down throughout the whole school community.
DEBRA: Primary school was good…
ROBYN: At the age of 3 and a half, he was diagnosed. We were told to just go away and just deal with it. Then we went back for our 6th monthly checkup and he turned around and said,
“He needs early intervention”
“What do you mean?”
“Oh, you know that pack I gave you”
“Oh, I forget, here you go, here’s your pack.”
So, by then, he was already 4 and when I made an inquiry, he should be 18 months. I was like, how is this early intervention? Went around and did a lot of stuff ourselves, sourcing things ourselves. But in that process, I put his name down at every school that I could possibly put his name down in. And I did that out off, sheer panic but in hindsight it really taught me some really good lesson.
So, he turned 4, he was already in a preschool, everything was fine. Then he was turning 5 in the January, so he could have started school but he could have stayed until he was 6. The preschool kindly evaporated his spot in December. I think it was December 16th. They said, “Oh we might have a spot for him next year so as he’s turning 5” So I contacted the Department of Education. “Oh no, no, no, hold him back until he’s 6. His got additional needs.” I’m like “Hang on. Department of Education, you’re saying hold him back until 6 but the preschool is saying there’s no spot for him. What am I supposed to do with this kid for a year?” I can teach him to read, I can teach him to write but what he needs is 29 other kids in a classroom to socialize. I got my cranky pants on. Screaming and yelling at everybody as it’s my way.
In the end, my phone rang. It was the twenty first of December, and I got the phone call. The principal of the school for children with autistic spectrum and there’s a whole load of different schools that are all over Sydney. She said, “Hi, let me introduce myself, I’m the principal for the Southeast in Sydney School for Children with Autism…And I’ve gotten, “Great! I bet you’re offering me a place at somewhere like frigging forests.” That was the first thing I said to her, those were cranky. And she said, “Actually, no. I’m offering you a spot.” which is literally 4 minutes from where we live. I’ve gotten, “Oh, we can come and check that out today if that would be possible!”
DEBRA: You took your cranky pants off!
ROBYN: I took my cranky pants off! But what had happened was the 18 months to 2 years previously, I put his name down everywhere and I was getting phone calls from people going “Oh we have a spot available for you, would you like it?” I was going “Actually, no. I’m fine, thanks.” Whereas I had a lot of people that I knew who had been diagnosed at the same time hadn’t put their name down because they’ve gone “Oh, he’ll be fine. He’ll grow out of it. He’s only got a little bit of it. A little bit of autism.” You know, that sort of terminology that happens. And then when they come to starting school, they had no options. Whereas we had all of these options out of my sheer panic of putting his name down everywhere. So when he started at the Southeast Sydney School for Children with Autism (snappy name!), he started there. I was like “Great! What’s the next step?”
We did the same thing for high school. When he was in year 2, we put his name down all of the different high school. So when it came to having to make a choice, I wasn’t going in to the high schools or into the primary schools going “Please take my son, please help me.” I was going in going “I have this son with some challenges but these are the things that he can contribute to your school community, these are the things that we can do as a family for your school community. We would like to engage in a discussion. And so it kind of gave me a little pine feud as supposed to what begging for help.
DEBRA: So it’s almost ‘just in case’, isn’t it? You go and put names down at schools at least in New South Wales and Australia so that you’ve got an option?
ROBYN: Option, yes. And there is nothing more refreshing than someone ringing you up saying, “Hey, we’ve got a spot for you.” and I say, “Actually, thank you but we don’t need that. Thank you for your time.” It was so empowering. As a parent who has got a child that has many options that are not empowering, it was very empowering to be able to say, “Thank you, we’re fine. We’re good here.”
DEBRA: And not have your cranky pants on.
ROBYN: Yeah, cranky pants are not a very attractive pants.
DEBRA: I can see that. I can see that.
DEBRA: So he’s now in secondary school?
ROBYN: He’s in secondary school. He did repeat year 4, so he’s very old for his year. So he’s 15 but he’s in year 8 so most of the kids in year 8 are 13. So he is two and a half years older than the youngest child in his year.
DEBRA: Is that helpful or do you think that’s…?
ROBYN: Yes and No. He would not have been ready to move into high school when he was at the end of year 6. He would have been actually overwhelmed, academically. This is a kid who works his absolute backside off to bounce along at the bottom. He has dyslexia and ADD as well so he bumps along at the bottom but he loves school and he tries very, very hard. So, he always gets one for effort like one being excellent for effort.
So, one of the things that Darren and I had made a really conscious decision when he first moved into schooling was that I didn’t care about is marks, don’t care about his marks. Yes, of course we want to support him but marks are not what we’re looking at. What we’re looking at is utilizing the tools that he has to the best of his ability and keeping his confidence and keeping his enthusiasm about learning.
I reflect back on my own schooling and I see, when I was a child, they were kids in the class who were the same as Riley is. So, my key thing was is that, when I look back on those kids, they hated school, they despised it. And because they had it school, they didn’t like learning and we wanted to ensure that he had a positive experience in schooling so that he had a positive experience in learning because learning doesn’t finish after you finish school. When you get a job, you need to continue learning, you need to be enthusiastic about that.
So, he moved from the autistic school. We were told that he was gonna need to be in a special needs school long term when he was in year one. And I was like, I can’t accept this because I can see that there’s so much more. There was just something that was so much more and at that point, I basically said to Darren, “I want us to do everything we possibly can so that even if he does stay in a special needs school, I can say we’ve done everything.” So we did some therapy, we did OT, speech.
DEBRA: So intervention to sort of helping…
ROBYN: Sorts of intervention. There was a beautiful teacher, Mrs. Grey, she was a lovely teacher, very experienced and she said, “Look, there’s a whole lot of reasons why he shouldn’t be in here but he needs to be in here because he needs to learn.” So we did all those things. I’m not trying to say that magically he was cured. He wasn’t cured but he got his focus to a point where he was starting to read, he was starting to be enthusiastic about things.
DEBRA: Was it everything you were doing? Or do you think there was one thing that helped him?
ROBYN: I think the one thing that, it’s not what we’re really what we were doing, I think it’s part of the type of person that he’s dealing with. For all that he has, all of these challenges, he has a lot of empathy. So he really wants to get his place and he doesn’t like people to be upset with him. So he will try very hard. Now when I think about that from my other son who doesn’t have special needs. One with special needs, one with special wants. So the one with special wants doesn’t necessarily want to do what other people tell him to do whereas Riley, “Okay, you want me to do this? I’m gonna try and do this.” So, every time we’d set a challenge for him, we try and support him and he would be happy that he has completed it. Not just because he has completed the challenge but he knew that it was important to us.
DEBRA: So, it’s almost an inner thing that made him… but from what you say is actually all the support that you provided gave him the goals to work?
ROBYN: I guess so. From our perspective, one of the things relatively early on that I sort of tried to get my head around was the whole issue was when we first got the diagnosis, “He’s not gonna get any better, you need to deal with it.” Then we went to a lot of meetings with other families that were still going through the same grieving process because you’re grieving for a child that never was the one you thought you had. Many of them were doing two things. One was trying to fix their child like they’re broken. I’ve never really seen Riley as being broken. He’s just different and he’s difficult to understand but when you stand in his shoes and understand where he’s coming from, you can see it. You can see it.
So, I’ve always thought to myself about Einstein only ever used a tiny part of his brain so if the part of the brain that Riley’s using isn’t working, it doesn’t mean we need to fix that part of the brain, it means we need to use another part of the brain to take over that job. So, that’s kind of been the philosophy of doing as many different interventions as we possibly can. He’s not fixed, just different.
I think the second thing was, so many parents were spending so much time trying to understand why this happened and who’s to blame. And I believe you can’t do that. You need 100% of your time and your energy to deal with what’s ahead of you. If you spend even 1% of the time looking back as to why or who’s to blame or any of those issues, then you’ve only got 99% to deal with what’s in front of you. You need a hundred and thirty percent to deal with what’s in front of you.
So, I came away from those meetings going “Actually, I don’t think he’s broken and I don’t have time to waste time thinking about why.” I’ve got to get on with…. I’m a bit of a doer. So, I then sort of constructed this issue of if he’s not broken, I don’t need to hand him over to someone to get fixed. We see lots of parents do that. “My child needs speech pathology, fix this.” Whereas what the philosophy that we took was more like a wheel.
And so, we as a family were in the same task; so that was myself, my husband, Riley and his younger brother. And from that, all of the different spikes that come out from there and there were all the different interventions that are happening and it’s our job as a family to pull those interventions into a practical application on a daily basis. So, speechy, and obviously we sit down and do the physical speechy stuff but we do that with my youngest son as well so that my youngest son was understanding all of the practical applications of what we were trying to do. So, we’re not making it his responsibility to teach Riley but making it part of our whole integrated family approach.
So that when the speechy was telling us something, it was our job to then communicate that to the school and put the school in contact with the speechy, so that it becomes an integrated program that was across the board. So that’s kind of the philosophy of how it went.
After six months, Mrs. Grey came back and said, “He can’t stay here. He needs to go to a mainstream school.” By mainstream, was he cured? But he had developed enough skills to not be sitting underneath the table and screaming all day, which is what he was doing, to actually sit down at the front, look at the class, listen to the teacher and be engaged with what was going on. So that was when we moved to a mainstream public school where he moved to and got the grand sum total of half an hour support a week.
But, within the environment that we had, the public school that we had and with the principle that we had, we felt very comfortable that he was going to be supported because it was a small school, as I said there was only 4 teachers. If he was in the playground having any issues, all of the teachers knew him. They all knew what to do, they will open to me coming in and working with them and say “Okay, what challenges?” We didn’t get a phone call saying, “Hi Ms. Robyn, I’d like you to come into the office to discuss what happened to Riley. Blah blah blah.” It was “Hi, Rob, how you going? Look, can you just pop in because I’d like us to have a bit of a chat about something that happened in the playground today and I just wanted to understand how we can work together to be able to help resolve it.” How lucky we are!
DEBRA: So, it’s a collaborative approach?
ROBYN: Most definitely collaborative and quite humbling. You know, having to go in and say “Look, I’m here for you.” I remember standing in the playground with his very first teacher in the mainstream school, she was quite young, quite new out of university, we were chatting. I said, “How long have you been teaching?” She said, “Two years” I said, “Have you had an autistic child in your class before?” And she went bright red and she looked at me and she said “I’m so sorry, Robyn. Riley is my first.” And I said, “Don’t worry, he’s my first, too!” [Both laughs] “Let’s do this together.” And she was laughed and she was like “Yes, let’s do this together. Let’s see how it goes.”
Key takeaways this week? Well, planning ahead when it comes to schooling so that you have more options and I know this is an Australian focus in specifically about schools in Australia but I think it’s a great advice, regardless. Secondly, don’t think about fixing your child, they’re not broken, they’re unique. And we need to work with them in a way that works for them. Finally, focus 100% ahead, not think about what’s behind, who’s to blame, why did this happen. We do know isn’t always easy but as Robyn says, we need to be focused ahead to do what needs to be done for our children.
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