Podcast Episode 09. With perseverance many great things can be achieved. Sarah is living proof of this with her son Jacob, who has Asperger’s. In this two part podcast we will hear how Sarah guided Jacob through school and gave him the skills to succeed in quite a demanding job. This really is a success story that is inspiring and one we would all be happy with for our own sons and daughters.
In this first part, we hear how Jacob had difficulty coping at school in the beginning, and how Sarah took the unusual step of volunteering to be his 1:1 support in the classroom during his primary school education (ages 5-11). From this Sarah gained a unique perspective on the classroom, and she used this knowledge to teach and model all the skills that come more naturally to most children. She is honest about both the lows and highs, and the challenges she and her son faced as Jacob gradually became a successful teenager.
His high school years also had its difficulties, but he did graduate with A levels (the highest qualification taken in the UK school system). Next week we will hear about his job, and some more of Sarah’s advice. But this week, we focus on the story of Jacob’s school years.
[.35] – All about Sarah and her son Jacob
[1.35] – Primary school and the challenges for him and for his family
[2.30] – Moving to a smaller school doesn’t solve the problems
[3.20] – Sarah become Jacobs 1-1 support in class at the age of 7
[5.00] – Modelling skills and scripts for interactions
[7.00] – Moving away slowly from close support
[10.45] – Finding the right secondary school
[11.30] – ‘He’s my son’ a moment of pride
[12.30] – When having a label can actually be a benefit
[13.40] – Jacob finds his own tribe
[14.50] – Engaging with and teaching the teachers
[16.45] – Using the drive to school as an opportunity to ask and answer questions
[17.10] – The future is positive and practical and vocational
Modelling skills and scripts from a young age
Loving you is easy living with you isn’t always quiet as easy
DEBRA: This week we have the first part of a two-part episode. In this week’s episode, we hear from Sarah about how she helped her son, Jacob navigate his school years. And then in next week’s episode, we will hear from her about how he made the step to paid employment and what that has meant for him and for his family.
DEBRA: This week we’re talking to Sarah who has a son with Asperger’s and we’re going to be talking about the tools and tactics she used to help him get through school. So, welcome, Sarah!
SARAH: Thank you. I had a very interesting life with my son, Jacob to begin with going through school. He found it very, very difficult and myself to cope. Early days, he was with Childminder and as the amount of children increased, we noticed that he was having more and more problems coping with that and we were having incidents of hitting other children, not getting on, having problems. And as we moved him up and the ratio of children to adults increased, then we became more aware of more problems.
We went to our first primary school and within a month we were getting letters home, calls home. There were problems; he was hitting, he wasn’t understanding, he wasn’t giving people their space and being quite difficult in class. It became very, very difficult and I got to a point where I was really at my end of my tether and almost had a nervous breakdown about it because I couldn’t face the children, the teachers and the other parents that I was being brought up in front of, to face the fact that my child has done something that they felt was terrible and obviously, he was.
I realized that I had to try and do something to make a difference. It was a point that we decided, because the school he was at, were trying to make us do things in a way that we weren’t happy. They were trying to get us to discipline him home when he had done something at school and to send him to bed at 6:00 and not giving him any treats. So we then decided that perhaps we would move him just up the road to another village that had a school that was smaller.
And of course, as you can’t run away from these problems, just a honeymoon period and all the sudden, there they were again. So clearly, it wasn’t the school or the children, it was actually our child. And we had to face that and that’s quite a difficult thing to face. So we then talked to the head and he told us that he’d seen many naughty children and that Jacob was not one of them. And he suggested that he was on the spectrum. That was obviously something that we were worrying about before then but we realized that we would have to do something about. So, we went into getting him diagnosed.
What I felt he needed was one-to-one because he was not coping and he wasn’t statemented. And at that point, statements were hard to get. So, I decided I couldn’t cope with it anymore. There was a teacher in the class and I said to her, “What can I do?” And incredibly, thinking outside the box really is that she said, “Come in and help me.” And so I took a break from work, no pay. I went in there and gave him, voluntarily, the one-on-one help. And she let me sit beside him because she said to me, “I’ve got a classroom of twenty-six children but if I’ve got somebody that can deal with him, then we can all get on”. It worked incredibly well and when he got particularly difficult, which he did, I completely shattered him.
DEBRA: What age was he?
SARAH: He was in year 2 so that would be about 7. And she put a desk at the side which in some cases most parents might have been very upset about that because he was being put aside, separated from the others but that had to happen because when he was sat beside somebody, troubles would start. They’d start moving his stuff or he’d start stabbing them with a sharp pencil and all sorts of things. So, I followed him when he went up to the teacher’s desk, I stood in the line with him. I know that sounds very strange but I was giving him those skills “That’s not appropriate to do that and talk to somebody or touch them” so I was telling him about his spatial awareness, “This is how we stand in the queue. This is what’s appropriate when we stand in the queue.” Next to the teacher’s desk, I’ve told him how he should sit and how he should listen.
So I was modeling good behavior but not good behavior, what he should do and I was also trying to model those skills he didn’t have like spatial awareness, the distance that you should be from somebody, how you should act, what you should say, what was appropriate, what wasn’t. And so even at sitting in a dinner hall, I sat beside him. I went out to play with him at breaktime, lunch time. And I tried to monitor the games. So, I learned a lot about my son then. And I learned to know a lot about other children. And it gave me that insight that special needs children, it’s not always about them, it’s about the reaction of their peers and the interaction in the classroom.
So, we then devised these strategies that might help because I had noticed certain things went wrong so queuing up when we went into school so after break at lunch and then the problems would start because it’s all noisy, they were being silly and then Jacob would strike out because something would happen. He wouldn’t understand or he’s standing too close, he’s irritating somebody. Always pushing because he wants them out of his way. So that would always start and then once you’ve got that problem, the whole day would go wrong.
So, we blew a whistle. On the first whistle, the equipment is put away and then on the next whistle, they then line up. So, we devised that on the first whistle, Jacob would just walk straight to his school, get into his classroom, and sit down before all that noise and of all them walking in and all that pushing and shoving went on, he was no longer part of it. So that was brilliant.
Me teaching him what games to play like they used to play hide and seek, they would play games where they’d be shoving and pushing and play fighting and so I was able to say, “Actually, Jacob that’s not a good game for you because you don’t know those rules.” I found it quite stressful at times when he was being very difficult so we have this lovely system that we could just signal. I would go outside, have a little cry. I went in to year 3 with him. We decided that I would sit beside him. There would be a desk of four and he would sit at that desk and I would then support that desk of children so it had gone from being one-on-one to being to being a group. So, he became slightly more independent. When they went to play, I looked from a distance not actually with them. When they sat in the lunch, whole eye, just made myself aware and if I saw a problem that I would make sure that didn’t happen.
And so, the situations in school became more positive and so he was able to learn in a more positive calmer environment. I’m not saying that things didn’t go wrong because they did but it became better and then as he got to year 4, that situation again; I worked in the class but not at his desk and he wasn’t able to come to me. If he had a problem, he had to go to the teacher. So, we were trying to just pull away. So, we started with very close eye. I was in charge and then we were slowly pulling away, giving him that independence. But we didn’t want to just say, “Now you have to do deal with it”. And it worked!
Jacob was able to cope. We had some quite difficult times. I think at one it was quite amusing wherein, year 6 they brought in this woman that was going to deal with anger management. They thought with the transition, it was a good idea. So, he was told that if anybody was annoying him, that he was to write to a little note, a letter to them saying all those things that he felt they were annoying him with. So, all the things that was wrong with them and he was to put in a letter and they he would just put that away, get rid of it. And because it got all those emotions out, that was supposed to make him feel better.
What they didn’t know was Jacob was a very different character than that. So, the next time this particular girl irritates to him again, he put the note that he had written about all the things he hated about her on desk and walked to the toilet, thinking “That’s it! Great big wow. Done it”. Came back from the loo and thought why is all of this hoha going on? The girl was in tears, she has shown the teacher, he was gonna be expelled for the whole thing. It was just terrible because it was huge but I realized that in Jacob’s eyes, that was quite logical. He’d written down what he thought of her, he’d given her a chance, he put it away. She done it again. That was it, she was going to find out what the problem was. It was a logical. She needed to know but he didn’t think of those consequences and that’s the problem with Asperger’s is that they don’t think of the consequences of their actions.
So, these are the things that can go wrong but he got to year 6. Year 6 comes to the Kent Test, I said to him, “You’ve got to get through this, Jacob because I don’t know what will happen to you if you don’t do well” So, because I’d said “Get through it”, apparently he worked for twenty minutes. The teacher in the class tried everything to get that boy to check, to do anything more, he had not. He looked out the window. Luckily for me, he got through. He got a good mark as well. And I said to him, “Why didn’t you continue working?” He said “Because you told me to pass. You didn’t tell me to get full marks. If you could have told me to get full marks, I might have tried harder but I knew I had passed.” I didn’t know he’d pass and I spent many months worrying about it.
But incredibly, the lady that I talked about earlier, helped us get him into a school in the area, drama school but it was mixed. And he didn’t get in to begin with, he was given a sports school, all boys school which for Jake was bad because his main friendship groups were girls. A tomboy girl but girls because they appear to have more empathy. He didn’t play football; he didn’t do all those boy things. He did like armies and things but he liked to control. So, girls, tomboy girls were great because they would follow his lead. So that’s what he likes. So, we felt that a mixed school would have more empathy. We look at it, a music room. Because in music, science were his things as probably people with Asperger’s children will know. He spoke to the teacher there and fell in love with her because she just clicked with him and the music room was his little escape place.
Where ever he had any time and he would just go to the music room and she would let him sit in there and play piano and just relax. All his school life really there and he became her right-hand man and he did all the shows with her. Actually, in year eight, he starred in Oliver which was amazing for us as parents because for once I was going to a show and my son was the star! And everybody sitting beside me saying, “Isn’t he brilliant? Isn’t he brilliant?” and I was able to say, “He’s my son”. For once in my life, I could say “He’s my son” And although I loved him to death, I used to have real problems about “Why me? Why me with this boy?” And I’m sure we’ve all thought the same thing. We love them to death, wouldn’t be without them but there he was, he did that. And music and science and computers became his thing.
DEBRA: A couple of things to sort of revisit things, so he went from primary where, I suppose in a way, you’d been modeling lots of behavior and you being with him and, as you said, you sort of pulled away the scaffold a bit. When he got to secondary school, what kind of things did you then do to sort of help him?
SARAH: As you normally know at secondary school, you don’t get in there but with Jacob almost immediately. They realized that he would need a little bit more help because of his special needs. He was given a mentor and I think this is also something to consider as parents that when you say you don’t want your child to be labeled, you don’t want to go for that diagnosis, you’re also maybe stopping them getting that help later on. Because when they got to secondary school, because he had the school plus, they had to look at him and say, “What can we do to help him?” And if he didn’t have that, he would just be coping and probably be a naughty child and possibly be excluded. But I was able to go in there and say, “Let me help you” and that was very unsual because parents don’t normally but I was in there almost on a weekly basis in the first two years. And the same comment was said to me in a new school (because they were handed over), “I normally see this but by the time these boys get to year 9, you normally find that they’ve matured enough and they’ve worked out.”
With primary schools, the children have to be friends with almost everybody. There’s no sort of segregation. There is a little bit of segregation as they get further up. In secondary school, he could find the geeks because he is a geek. He is a lovable geek. And so he found those geeks. The cool guys and the dudes and the sporty guys, there’s all these groups and he found the IT geeks and the music geeks, and he became secure in that. And so, I was often called school because he was not doing his homework. I think he had three hundred detentions and I said to him in the end, “It’s no skin off my nose” The reason that he won’t do it at home is because I fought with him for 4 or 5 hours and it’s making our home life really difficult. In fact, it almost causes a separation between parents because it’s really, really stressful.
So, I was taking in there. I suggested things but I couldn’t get in there like I could in the primary school but I could say to them, “These are what I tried” And so they did the same thing. They tried to model. So, they looked for trigger situations like RE lessons because they don’t believe it, of course because they’re logical and they won’t believe that story and they’re scientific. Music was fine. I found that a lot of teachers at the secondary school didn’t know about Asperger’s. A lot of them hadn’t come across it before so I made sure that they were given the leaflets and so because I had given them that extra effort and was able to come and say, “This is what I did, I think that they felt that they needed to go a bit further.
And I also made sure I went to every event and I was able to talk to the teachers. I made sure I was always there for the parent-teacher meetings. They were always long. I was always hearing about behavior, why it wouldn’t work.
DEBRA: You mentioned the mentor at the school, who was his mentor?
SARAH: It was a young girl. I think she was attached to the special needs’ department and she was really nice. She used to go in and have really long chats with her and then she would take the time to get to know Jacob. She would go in and sit with him when he was told to go to his detentions. But detentions for Jacob weren’t a bad thing. He went into class when it was quiet after they’d already gone home. The teacher was there so he could get a one-on-one with the teacher. I mean he was great one-on-one and he built up great relationships with the teachers. They were angry that he was there but really, Jacob is a very nice, sociable chap, one-on-one. So the child they saw in class; giving them trouble and not getting on with their work and annoying them, one-to-one at the detentions and they thought, “Hey, he’s nice bloke” So actually, it help them a little bit find out a little bit more so it was his way of coping without actually having to do the homework.
So, we had mentors, he never got the school bus and I would never make him do that because he hates loud noises and I thought, this is not a great thing that he appears at school stressed because people have been whinding on the bus and he can’t deal with that. So, I drove him in for 7 years and actually, I found that quite interesting because it was half and hour of being able to nag that he hasn’t got homework or chat him about situations to deal with.
DEBRA: So more of the sort of talking about modeling…
SARAH: Modeling, yes. So, if he’s had problems at school, he would tell me what the problem and I would say, “Well, if that was me, Jacob I’d have done this” and that’s actually where we solved most of our problems. He would tell me what’s gone wrong at school and I would say, “Right, I would now go in, have a word with your teacher, go straight to the teacher when they’re on their own. Say what you think had happened and what you wanted to have done”. What Jacob’s problem was if things went wrong, he couldn’t patch it up, he couldn’t resolve it on his own. He needed somebody else to help him and he had to learn how to do that. And he has now, he’s brilliant!
And I knew that Jacob was going to be Jacob and he was going to get there and I knew that maybe he might not be successful at the end. I didn’t even think we would get him to GCCs and he got GCCs. He got good grades as well. Then he went on to A levels and I went “Wow!”. I couldn’t believe that. He actually got in. He got in by the skin of his teeth but he got in. Because he wanted to continue with the music and the science, he got in. He didn’t do the work, he could get away with GCCs but with A level, he couldn’t. He should have got As and Bs and Cs but he didn’t. But I think Jacob will get ways going because of practical and vocational work and I think that’s possibly a way that some parents should look, see what they’re good at and see if they can get him to doing that. Because they like to physically do things rather than learn about it and write essays about it.
That’s the end of part one with some great insights there into Jacob’s journey. My key takeaway this week is all about the importance of modeling skills and strips from a young age. Also, I found myself thinking “So I’m not alone in thoughts about loving my daughter but at the same time, finding her pretty difficult to live with.”
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