Podcast Episode 34. The term ‘letting go’ means different things to different people. Sometimes as parents we have to let go of our own expectations of what our children’s lives will look like.This was the case for this week’s guest Fiona who found that once she let go of her own expectations it opened up a new world of possibilities. Originally from the UK but now living in the US Fiona shares her story about why she believes letting go of expectations was the best solution for her family.
Fiona has two sons with autism and she starts by talking about the struggles to get a diagnosis for her oldest son, Hamish, so that he could get the support he needed. Part of the problem was that because her son was coping with the school work but not with the school environment the professional couldn’t really see a problem. However, once he was observed in school the issues were acknowledged although it did take another 18 months to get the actual diagnosis.
Fiona also talks about those early school years and about how engaging with other parents at her son’s school at least helped resolve some of the issues at school. She feels that by talking to other parents we can break down some of the assumptions being made about our children.
Once they moved to the US and Hamish was by this time older a different set of issues arose. One result of this was that Hamish was put onto medication which turned out to be a huge mistake. As time went on, Fiona realised that Hamish needed a change…they all did. So, when Hamish turned 16, Fiona and her husband decided that they weren’t going to force their child through the education system any longer. So, they pulled him out of school, and she believes that was the best decision they ever made. This took away the pressure of expectations on him and has enabled him to figure out what is the best way forward for him.
Fiona’s advice to other parents is to let go of expectations that you and everyone else around you might have about what they should be doing. The focus needs to be what is best for them as an individual. It is never going to be easy to suspend our expectations because we all want what is best for our children but sometimes we need to let them go find their own solutions.Show Full Transcript
DEBRA: Welcome to episode 34 of the Journey Skills podcast. Bit of a change of direction this week, the Journey Skills podcast has always been about sharing stories and sharing solutions but the last few episodes have actually focused more on the solutions side of things with quite a bit around work and how to build self-esteem in our children.
So, this week, it’s a story from Fiona who’s a Brit who now lives in the US. She has two sons both with autism and she shares her story really from the beginning but we also talked about where her oldest son is now and her thoughts on his independence as he gets older.
There are quite a few things that Fiona talks about which I think in some ways we’ll all identify with. The almost inevitable issues with getting a diagnosis, the difficulties in navigating school and the dilemmas around school friendships and being left out of birthday party invitations, etc. There are few other things to listen out for. One is about building a network at school if you can. As she says people make assumptions about children so if you can get involved that can help write those down. She also talks about her son not being ready to move on at school and also about finding the right school for him.
Fiona also talks about a life event causing her to re-evaluate things and to re-think her own expectations and that included letting go of forcing her sons through the education system. She talks about mourning the expectations that we have as parents and what we think is going to happen when we have children. I’ve heard this idea before and, in some ways, I go through this and for me it’s about friendship. I think I’m much more desperate for my daughter to have friendships than she actually is. But it’s difficult not to want for your children, what you think is important and, in that situation, it’s still about letting go.
Fiona talks a bit too about the challenge of helping her son find a job and develop the skills that he needs and the need to have patience and to understand that he needs to go his own pace. So again, it’s about letting go. We have to let go so our children can find their own voice and their own identity.
DEBRA: This week we’re talking to Fiona. Fiona is originally from the U. K. but she’s now based in the US. She’s a mom to two sons with autism. Welcome, Fiona.
DEBRA: Can you tell us your story?
FIONA: I was originally a teacher. I was a teacher in what is termed Special Education back in the UK and I had a son back in 1998 and he was a fabulous baby. Very easy, settled and slept very well and reached all his milestones but as he became a toddler, he became quite challenging and he had a lot of tantrums. It was quite rigid. I actually knew about autism from my job but it never once occurred to me or my husband that he might be on the autistic spectrum until he got to school and all hell broke loose.
It took us quite a long time to get him diagnosed in the UK but we did eventually. Didn’t really help in terms of things like schooling. And then our second son came along eight years later. At that time, we were involved in the process of moving over to the US. And Felix, our youngest son, started to display fairly obvious signs of autism at about 18 months old. So, having been through it already, we were able to get him seen very quickly and get support in place for him.
DEBRA: In terms of sort of schooling, you said it didn’t help very much, so what did you do to help the boys then if getting help was so difficult?
FIONA: With Hamish in England, the first problem was that he was academically quite able so he was reading and writing and jumping through all the hoops in that sense. The issues in school were more about his behavior because he was profoundly uncomfortable. So, we were being pushed in the direction of getting behavioral support. He was quite grown up in many ways because he’s very articulate so when we first took him to see a GP, they couldn’t see any problem with him and it was only when a member of the medical profession went and observed him in a school environment that they agreed that maybe we needed help.
It then took 18 months for us to see a developmental pediatrician, got a diagnosis. That was not sufficient for him to get a statement and I actually ended… I was still teaching about going and I left my job in order to support him because the pressure was so great at school. It was an enormous pressure not just on him but on the teachers and so we resulted to me actually keeping him at home one day a week and teaching him at home and then eventually because of that and because of me giving up my job, we got a statement.
The statement basically meant he got access to a teaching assistant maybe two or three hours each day. That was the only intervention and it enabled him to settle to a degree. Once I finish working, I threw myself into the school. I was at everything. Basically, to ensure that he felt more comfortable with mom being around school premises a lot and helping out with PTA and that kind of thing. Also because of parents and teachers, I mean, it sounds crazy but I wanted them to know that we were not some kind of monster family because our child was so disturbed at school, he wasn’t getting any birthday party invitations, he wasn’t making friends. You know, people were giving us strange looks at the school gates. So, we wanted to have people understand this a little better.
DEBRA: Talking to people, did that help?
FIONA: It worked fantastically on a social level, yes. I think that some people in the school became more supportive as a result as well. In the classroom, he comes on a little bit but I mean that’s very much part of autism that he became more accustomed to the environment, to the people around him, to the routine, and therefore the behavior subsided a little but I don’t think he learned anything during his years in school in England.
DEBRA: Do you think that’s something you’d recommend the parents then to get involved in the school?
FIONA: Absolutely, yeah, if you can. I understand that not everybody can but I think that’s incredibly important. People will, even though we like to think of ourselves as being enlightened, people will make assumptions about your child based on what their children say, based on what they see and that’s not the whole picture so it’s incredibly important to connect with other people. Not least because you’ll come across other people whose children, they might not actually have an autism diagnosis but they’ll have some similar behaviors and once they start to see those connections, it makes life a lot easier.
DEBRA: Is that what happened to you then?
FIONA: Yes, definitely, definitely. They then started to talk to their children because we were friends and you know, they will say “You need to stand up for him. If he’s having difficulty, don’t get annoyed with him. Try and help him out.” And actually, there was one thing the school did which was phenomenal which was setting up a circle of friends for him. And that came partly from the connections that I had with the parents and they supported him on the playground and enabled him to receive more comfortably, I guess is the best way of putting it.
DEBRA: So, what’s he doing now?
FIONA: Right now, he’s in community college. The system is very different over here to the UK. He’s pursuing a degree. Community college is a two-year college, it’s almost like the first two years of university. It’s part of the New York State University system so he’s slowly making his way through his degree and then he’ll go on to what they call a four-year college hopefully and complete a full bachelor’s degree.
DEBRA: How did you find the transfer from the UK to the US? How did he cope with that?
FIONA: We were terrified as you can imagine and we were moving to New York. Our initial response was “Wow we have to live in Manhattan wouldn’t be that wonderful!” and when we came over to look for somewhere to live, it became apparent pretty quickly that that was not gonna easily work for him. Or us because we’re gonna have a lot of space. You know, New York is the city that never sleeps and it was going to be for long for him in a sensory perspective. So, we did as much networking as we could. I went online, I tried to find particularly British people who’ve moved to the New York area to see what they’ve experienced in terms of education and was recommended an area in the suburbs about half an hour outside the city. So that’s where we moved to.
We were nervous and actually the transition was much better than expected for all sorts of very strange reasons. In the UK, we lived in southeast London in a very mixed area, socially and economically. Sometimes it could be a little bit scary in the streets. There was a lot of litter everywhere and graffiti and we moved to a very tidy, I mean from my perspective, scarily tidy and neat. Suburb with white picket fences and that was it was like! There was no litter, there was nobody roaming the streets and so for him, it felt very calm and safe. The school he went to have much smaller class sizes than in the UK. They were of the same age where as he’d been in mixed classes in the UK and he immediately got support that we never had before. So he was given physiotherapy for his handwriting, put him into a social skills group so he initially coped very well with the transition.
DEBRA: In terms of making friends and that, was the easy for him coming from the UK or what that something so difficult for him anyway?
FIONA: It’s difficult for him anyway. That said, people expressed a lot of interests in him because he was from the UK. It still took him awhile to make friends I would say that in the neighborhoods, there were two or three boys that he connected with fairly well. I think their interest dropped off fairly quickly as he progressed through the schools. So, he was in that elementary school, he was there for 2 years. Over the course of that two years as they picked up a bit more on his idiosyncrasies, things became problematic again.
DEBRA: So initially it was because he was, I suppose, a foreigner. Not to use a wrong way but that of sort of interested because he was not from around there?
FIONA: Yes, people like to hear you talk. They like the British accent. And he had a nice British accent. So, I think once they realized that he was fairly quiet, he would harm back, he would sometimes get into arguments with teachers because he was quite literal in his interpretations of things, he’s the kind of kid that would intervene if he saw another kid bullying someone and he would do it in a very adult way which didn’t make him any friends. So, he left that school. Really, I would only say he had two good friends by the time he left that school and then he went on to middle school which was a complete disaster.
DEBRA: Why was that?
FIONA: He just wasn’t ready for it, emotionally. People with autism often emotionally they’re about two or three years behind their peers in terms of development and so you know if you’re functioning like an eight year and you’re going to middle school where people are talking about sex and swearing and that kind of thing, that immediately is gonna make you very uncomfortable. At the end of the first term, he was on the doorsteps screaming, refusing to go to school and unfortunately, medical intervention is fairly common and I think we felt that that’s one thing I would say about being in America, you feel like you don’t know the system, you’re not familiar with it, you feel a little bit wrong footed which is inevitable. And so, we did agree to put him on medication and that was a big mistake. He had paradoxical reaction to it which basically went on for about 3 years. We had him home schooled, that didn’t work. We went into a special program that was not appropriate to his needs at the school, that didn’t work. He got put in to a program for gifted special education, that didn’t work. In the meantime, he became quite aggressive at home; very withdrawn, didn’t wanna leave the house, became claustrophobic. It was just a very, very, very difficult period in our lives.
And in the end, I think two things that made a huge difference. For one, we decided to move and we looked far and wide. I mean, we looked as far as Colorado at one point and we looked at other States, Pennsylvania and New Hampshire, trying to seek out good schools, schools that were understanding. It’s not necessarily how good the school is, it’s more about whether or not they have a better understanding of your child’s needs. We ended up, on actually a recommendation of our psychiatrist moving upstate to a rural area with fantastic support and into a house that’s very private and secluded, quiet and since we’ve been here, he has slowly calmed down. He’s come off the meds.
That actually happened as a result of my father dying. My father died quite suddenly in 2014 and it made me sit up and go ‘Hmmm, what do we really want here? What do we need to let go of?’ And I let go of a lot of things and one of the things that I actually let go of was forcing my child through the education system. I came home and that point, school was not working very well despite it being a better place for him. We said, “Okay, you’re 16. You don’t have to be in school. Let’s take a leap of faith”. And we pulled him out and that was the best decision we ever made. I think the timing was good as well because he was maturing. He came out of school, he came off the meds, he calmed down. We pretty much left him into his own devices for about 3 months which was scary but then he came to us and he said “I want to do my high school diploma”, which you can do by taking a series of exams over here. So, he took a few classes for that, did that, got the diploma and started at college a year earlier than he would have done ordinarily.
DEBRA: So, do you think just letting go was really what he needed you to do?
FIONA: Yeah, totally. If I were to go back and give advice to anybody about dealing with a child on the autistic spectrum, letting go is probably the most important thing. You know, you go through a period I suppose. It sounds dramatic but it’s true. You go through a period of mourning. You mourn the idea you’ve had of being a parent but you don’t quite let go of it. You still have this idea ‘This is what my childhood was like and I want that for my child’ and you try work towards that. Might be the sleepovers, the going with your friends to the theme park, all that kind of stuff. It’s difficult to accept that that’s not right for them and it took me a really long time to get my head around that but as soon as I did, it made a huge difference to him. Because then he was able to come to us and say “This is who I am, this is what I need” which puts us in a much better position to support him.
DEBRA: You mentioned about sort of forcing children through school.
FIONA: I think everybody does this. You kind of assume that it’s gonna be the same for your children, they’re gonna be like you, and of course, they’re not. From my perspective as a teacher as well, I have very mixed feelings about the education system. It works for lots of people but there’s not a lot of people for him. We could really change things.
DEBRA: What do you see as the issue is in terms of his independence in living away from you?
FIONA: He wants to live away from us so that’s the first thing, that’s the most important thing. He’s not ready to do it yet, he needs to go through a few stages, I think probably several hundred steps to be honest before he would be able to do that. For a numerous reason, he doesn’t really have a concept, I don’t think he knows how to manage money. He wants to. He doesn’t want us to give him money. He wants to earn money but he doesn’t understand how to get a job. He’s been trying for some time to get a part-time job.
I remember the first application he filled in, he left off a bit blank. It was things like skills and he said, “Well I don’t have any skills”. And we said, “Well you do actually, like you know, you’re quite good at research and you have excellent writing skills.” “Oh yeah, but that’s not important in this context.” So, just getting him to fill him an application form correctly took him really long time and just understanding the process of selling yourself to somebody. He doesn’t get that. He doesn’t fully understand how to do that yet. He has reached the stage now where occasionally get an interview. So, he’ll get there but it’s gonna take a while and we tried to use the agencies that are there to support him. We’ve tried showing him sample CVs, pointing him towards research. He went for a job for a big company were target and because it’s a nationwide company, there was info out there on the internet about what questions they’ll likely to ask you, what sorts of answers they’re looking for, etc. Nope, he was gonna do that his own way. He wanted to go in fresh. And you know, he didn’t get the job. So sooner or later, the penny drops but it takes a long time.
DEBRA: So, it’s just a question of maturity I guess, is it?
FIONA: For him? No. It’s partly maturity and it’s partly experience. With Hamish has to go through things several times in order to get the messaging, I suppose. We’ve found that all our lives that we can try to explain something to him. It’s not necessarily that he doesn’t get it logically, it’s that he doesn’t agree and so we try to explain it another way, and another way, and another way and eventually we’ll hit a way of conveying things to him that somehow gets through and that he accepts. That’s just the way his brain functions.
I think that anyone on the autistic spectrum, a large part of autism is about anxiety and therefore you’re going to need, even if you’re very high-functioning, you probably going to need more preparation than most kids in order to live an independent life. When he does go to college, I’m hoping that he will be able to go into assisted accommodation. There’s accommodation at the colleges now, we would be supportive of him trying it out. We’ve suggested him just going there, Monday through Friday just to see what it’s like or seeing if he can have a week there during summer vacation. And he’s extremely resistant to it because the first couple of weeks he was at college, he heard rumors about people getting drunk and getting alcohol poisoning and fights breaking out. So that’s it. The shutters came down. He doesn’t wanna do that. So yeah, it’s just, you know, I’m sure a lot of people would have gone “Yey! Party!”.
DEBRA: I guess, it’s patience then, isn’t it? When he’s ready, he’ll do it!
FIONA: It’s patience, it’s really completely letting go of your expectations and seeking to understand who he is and what works for him and then working with that. But there’s a lot of gentle nudging goes on in our household.
DEBRA: Thank you very much for your time.
FIONA: You’re welcome.
DEBRA: Key takeaways? Letting go. Letting go of your expectations. They’re not necessarily your child’s expectations. Be patient in understanding, give them the time and space to become their own person.
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