Adolescence and How to Survive It

A Presentation to the 2000 International Congress on Down Syndrome
by Kylie and Evelyn Scott

Evelyn
The Congress theme is Down through the ages - and presumably the pun is intended. Certainly adolescence has been with us down through the ages. And there’s no doubt it’s here with us - and challenging us - in this new millennium, too. Have we learned anything from the past, we wonder, which we can use to help others into the future?

Kylie and I today will be speaking to you as survivors, over the last couple of years, of some fairly significant adolescent developmental experiences. So we thought - having survived - we might share some of what we have learned with others. But we have to stress that we're rank amateurs (hopefully not evil-smelling ones!). We have to stress that we're talking from our own experiences and from what we've learned through talking with other people about their experiences. We have no professional expertise; nor do we feel that what we will be talking about today can be taken in any way as authoritative. I have done a little reading on the subject, and I'll refer to a couple of publications later. I did ask my older daughter (who is studying Science Psychology at the University of New South Wales) whether she could suggest any papers or bodies of work that I could usefully look at, but she responded to the effect that adolescence is such a wide-ranging subject with so many variables that really there isn't much authoritative to be found anyway.

The reason Kylie and I decided to make this a joint presentation, by the way, is because I did not want to overstep the mark - I did not want us to tread on each other's toes, so to speak. We've been through some pretty emotionally traumatic times, and the last thing we want to do is put ourselves offside with each other.

So what is adolescence? My Macquarie dictionary tells me that adolescence is "the transition period between puberty and adult stages of development". To me that implies a very wide age range of susceptibility. I am sure we all know adults who, at a very mature age, drop all family and emotional responsibility and try to take on new lives in reality, only focusing on their own needs, on trying to get on with their own lives - in other words, getting caught up in the same adolescent blue funk that afflicts teenagers. To my observations, adolescence is a time of reflection, a time of self-absorption when one is grappling with the notion of just who one is and who one wants to be. It's a time when one can be consumed with self-doubt, despair and gloom one minute, and yet a moment later one can be assertive, exuberant, belligerent and all-knowing. Such mood swings are known to us all - we've all been there.

I am sure that most of the state associations in their resource libraries have a copy of Adolescents with Down Syndrome - Toward a More Fulfilling Life by Siegfried Pueschel and Maria Sustrova. It has chapters systematically setting out the physical and emotional changes that occur in adolescents, and as well has several useful chapters on beneficial social and lifestyle options which are increasingly becoming available in this day and age. Also, it talks of the ways in which computers can be both learning and resource tools.

To Kylie and I there are 4 critical aspects to bear in mind when one thinks of adolescence. They are communication, decision making, independence and responsibility. For good measure I'll repeat them: communication, decision making, independence and responsibility. I'll turn to these in more detail shortly, but firstly I'll hand over to Kylie for a few words about her impressions of 'growing up'.

Kylie
For me, growing up means being able to do more things for myself - it means being independent. When I was younger I was part of the family and just wanted to do things with Mum and Dad. But then some things got boring - like going to the supermarket with Mum but never being able to buy the things I wanted to buy that I thought were interesting. Doing jobs and helping out at home also got boring. In fact, everything got a bit boring.

At about this time my friends became more interesting than my family. I wanted to do things with other people. I wanted to be out there having all the fun that I thought everyone else was having. But my parents would not let me do a lot of these things. I used to think they were not fair because lots of times they would come with me. I didn't want them there so I would get angry with my parents. There were lots of things I wanted to do but I couldn't. I didn't really know what I wanted and I didn't know what to do about it either.
 

Communication

Evelyn
When Kylie was young, we put considerable effort into Kylie's communication skills - her self-expression, her vocalisation, her speech development. As a family unit, my husband and I and Kylie and her sister felt we communicated well - lots of discussions at meal times and on car journeys about the world and what was happening in it, about our daily happenings - you name it. However, 2 years ago when Kylie's father decided he needed 'time out' for himself, it became apparent that Kylie was unable to express her emotional confusion, her upset and distress in any meaningful way. We could look at other people and talk about what made them tick, but Kylie was unable to verbalise all these very heavy emotional reactions she was experiencing. Kylie has an innate positive approach to life. She wanted to be happy and she wanted to make other people happy.

But nothing was working - for her or for anyone else. And of course this was happening at a time in Kylie's life where many changes were occurring anyway - going from year I2 to TAFE, different timetables, different structures, different people - and, as well, a part-time job. Kylie was tackling everything positively and with gusto, yet at the same time absorbing more and more confusing pressures. Some of this pressure found release through anger - mostly with me because I was the closest one to hand, but also with herself. And anger, when one does not know how to handle it, can cause an implosion. Kylie might now mention a few things she recalls about that time.

Kylie
I can recall the pressure on me to manage myself better and I felt pressured to make Dad happy. I was missing Dad. I missed my sister, too, who was studying in Sydney. Sometimes I felt I wanted to kill myself because I could not talk about my life with my parents. But I have learned lots of different ideas from Mum. She is a very lovely lady, very talented and a warm person to me. I love her very much.

Evelyn
So we had to learn - and quickly - how to talk about our feelings - whether it be joy, sadness, fear or anger. We had to understand that it’s certainly okay to feel all of these things, but we had to learn how to give them their right perspective in the greater scheme of things. And the best way for us to put them into some sort of perspective was to talk about them. I can remember standing toe-to-toe with Kylie at times, absolutely insisting she tell me what she was feeling and thinking so we could talk it through and decide on a course of action to deal with the problem, if that's what it was. (Although I can imagine that standing toe-to-toe with most teenagers would only get one flattened!)

We both found, with such a lot going on, that we benefited by getting things off our chests. I encouraged Kylie to talk with some of our adult friends. This had both advantages and disadvantages, as things turned out. Kylie's adolescent view of the world found it pretty satisfying to garner sympathy from so many people so sometimes she coloured or enhanced incidents. I certainly don't think this was a deliberate ploy; it was just one survival mechanism she latched onto for a time. And then Kylie's need to discuss things - or perhaps to indulge in more sympathy - led her to talk about her personal problems with inappropriate people, that is, her colleagues at work. It took a while for Kylie to distinguish that what is appropriate to discuss with friends is entirely inappropriate to discuss with colleagues.

Things did get physical at times - Kylie did take it out on me - but what was more worrying was that she started taking it out on herself. Fortunately at this time we had access to a local community youth counsellor with whom Kylie started talking on a regular basis. As a complete outsider, as a young person herself, she was able to encourage Kylie to talk freely about her worries and her fears. She gained Kylie's trust and thus was able to teach Kylie mechanisms for sorting the wheat from the chaff (for those who have a farming background - which I don't, by the way, but I guess it reflects my age). Kylie still drops in for a chat with her on a fairly regular basis but I gather, these days, there’s less problem solving involved and more discussion of 'How's the world going?'

Also, at around this time, we came across a wonderful resource published by the NSW DSA. It's a folder called 'Talk to Me' which is described as 'A personal development manual for women and girls with Down Syndrome and their parents'. Whilst it discusses Friends and Sexuality, of most benefit to us at that time were the sections on Feelings and Self-Esteem. The feelings discussed included happy, excited, proud, sad, angry, scared, confused and embarrassed. For each feeling we discussed what made us happy, sad, etc; how we know when we're happy or sad; how we communicate these feelings to others and the benefits to be gained by sharing these feelings. Importantly, each assessment ended with the conclusion that all feelings are better understood or eased or accepted when discussed with others. I notice in the most recent NSW DSA newsletter this manual is being adopted overseas as well. I can't recommend it highly enough.

Kylie
There is one important thing Mum forgot to mention. It is important for me and for my future that I listen to people. It was hard for me at that time to listen well because there were so many things happening with my parents that were confusing me. I think it must have been hard when I was small and had Down Syndrome. But my adolescence has been good for me because I have learned so many things. My sister drives me totally mad - around the bend, actually - but she tries her best to make me happy. She is a wonderful person to be with. I have made mistakes in my life but things get easier as time goes by. My Dad has problems with us as a family. I don't fight with my Dad over sad things now because I feel I'm over that. But I have been pressured sometimes. I have learned we all make mistakes in our lifetimes.

Evelyn
So Communication is the first of the 4 points I want to highlight, and Communication is the one I can't stress strongly enough. And - unlike us - don't leave it until your person with Down Syndrome is I8. It needs to be tackled very early on - dare I say from age I0. We know that adolescents spend a lot of their time internalising and questioning - and we know that's all part of it - but it's critical that they have the ability, when things are starting to wear them down and to take on disproportionate significance, to be able to vocalise their feelings so they can be rationalised and dealt with. Even when there are no problems to be faced, we all have happy experiences we need to share - but, as with so many other developmental stages in the life of a young person with Down syndrome - they have to learn, step by step, how to do it. It's like everything else - it's a matter of working it into your daily life. If you have an argument with your boss at work, when you're home you can say, "I got angry with the boss today because she wasn't listening to what I was saying. I'll have to make an appointment with her and talk to her when she has more time." That is, it is necessary to identify the emotion, say how you felt, and throw in a suggested solution. Or else: "I felt really happy today. I met an old friend and we had a lovely time catching up with one another." Or again: "My father has died. I'm feeling very sad, and you probably are too. It's okay to cry, to feel miserable because we will miss him, but in a while we'll get through it and we'll remember him as he'd like us to". These might be very simplistic examples, but hopefully you can understand what I mean.

Family and friends are critical in the communication learning process, but there are times when all of us can use the benefit of an impartial person who can take things on board without being judgmental. All schools have counsellors, and all churches have caring people well qualified to assist at times when we have things to get off our chests. And if the first person you try is not the right one for you, try someone else. There are lots of resources out there in the community when you look around. They are there for everyone. We suggest you use them.
 

Decision Making

Evelyn
Decision making is something we all learn along life's path to a greater or lesser extent. Some of us make decisions instantly - some of which are successful and some of which we might later regret. Some of us like to have a bit of a think and then decide that in all the particular circumstances we can proceed in a particular way. Some of us like to think and think and think - and then, because we can see so many opportunities or obstacles or whatever along the way, we really can't make a decision in case we make the wrong one!

We all know teenagers who get out of bed in the morning and take an hour to make a decision about what to wear to school that day (a good argument alone for uniforms). We all know teenagers who - on the spur of the moment, and just because it might have seemed to be a good idea at the time - decide to do something such as throwing rocks at cars which is really pretty stupid and can get them into lots of trouble - not to mention the impact it might have on other people. We all know teenagers who, sadly, because they can see too many problems or hurdles when it comes to taking the step of going from school to further education or into the work force find it all too hard and effectively bury themselves under their bedclothes.

It's stating the obvious, perhaps, but I'm convinced that the most effective way we can learn decision making is by making mistakes. Kylie missed the bus by deciding to sleep in and thus was late for college. It only happened once. Kylie used to spend all her pocket money at the school canteen - and then had none for an outing at the end of the week. It only happened once or twice. Kylie used to lend money to people at school who promised they'd give it back. The light dawned after a short time that there was no way she would see that money again. Kylie learned that staying at 2 households in the space of a week created just too many pressures for her to handle. It took a fairly severe panic reaction before Kylie sat down with her counsellor and, in the end, decided for herself that, though she loved both her parents and wanted to be with them, realistically all the toing and froing stressed her too much. She then had to decide where she would spend the bulk of her time and how she would be able to see the other parent without putting herself under too much pressure.

Again I suggest that decision making has to be learned at an early age. As parents it's easier for us to organise matching clothes instead of letting the child choose, it's easier to pack the schoolbag than have something important forgotten, and it's easier for us to drive the child to a venue than to sort out timetables and let them tackle the public transport system. As parents of a child or adolescent with Down Syndrome we're very conscious of the increased risk factors involved in their day-to-day existence.

But if we don't forget things, if we don't mix with the wrong friends, if we don't get pressured by the kids in the underpass on the way to school to have a cigarette, if we don't have a few drinks too many, if we don't get lost and have to find our way out of it, if the pick-up that has been arranged doesn't work, if we don't talk dirty, if we don't learn that there are people who will use us or abuse us in one way or another, how will we ever learn to differentiate between what is right for us and what is wrong for us?

Kylie
It was hard sometimes for me at school. But I learned to say no, and I learned to stand up for myself. The kids used to hassle me sometimes when I walked through the underpass on the way to school. Some kids wanted me to have a cigarette but I think smoking is gross so I'd say no. So they teased me. But it took a while for me to realise that I had to sort out what to do with the problem that these kids were making for me. I was the one who had to sort out what to do about it. For a while I got more and more upset and hassled, but then I talked to the teachers about it. They helped me sort out what I should say to the kids. I also decided to go to school a different way for a while.

I know lots of people are lonely and find life difficult. I will always try to help them and not put pressure on people. Everyone has to make their own decisions about what is right for themselves.
 

Independence

Evelyn
In adolescence one of the things we push for is more independence - the freedom to make our own choices, to do what we want to do, to come and go as we please. Of course, independence is strongly linked with decision making. If we can make decisions, we can gain more independence. Even making the wrong decisions develops independence - we certainly that we won't do it that way again the next time! Independence is about having a weekly allowance to spend as we see fit - on fares, outings, snacks, drinks. Independence is having an EFTPOS card so that if we want to buy an item of clothing or a present for someone we can buy it that way. Independence is also realising that using the EFTPOS card still means the money comes out of our bank account - not mysteriously from out of the ether, or - as was the thought for a long time - that the bank is generously just letting us spend their money! Independence is being responsible for doing our own washing and ironing, for clearing up the kitchen without being asked, for being solely responsible for our personal hygiene and for buying the toiletries and necessities of life a young woman needs. Independence is being able to buy Mum flowers when you're feeling pretty good about life generally, and about telling people how well things are going and how grateful you are to people for their help at times. Independence means you can dress how you like, sleep in and go to bed when you like, choose where to go and with whom, be able to pick up the phone and chat to friends, and be able to think about and plan exciting outings or holidays.

Kylie
Independence is important in life. I am learning all the time how to be more independent and travel from place to place. When you are independent you get involved in very interesting things. I have been offered a volunteer job as a hostess at Homebush for the Olympic Games. I'm really looking forward to that - but I know it means I'll really have to be independent and look after myself - and probably look after other people too! Independence means being careful with my money, too, because I want to be able to live away from my family in the future and that will mean knowing how to look after my money. Sometimes I used to think independence was thinking ABOUT myself. But I now know that independence means thinking FOR myself.
 

Responsibility

Evelyn
Decision making leads to independence, but you can't enjoy independence unless you accept responsibility. Adolescence is a time when we all are prone to act irresponsibly. It's a time when we are looking for challenges. It's great if the challenges we take on board are constructive ones, but again it seems as though we almost have to act irresponsibly before we know how to act responsibly. We can all be cautious and always do the right thing, but we also have to experience what it is like to let our hair down. That could mean going out on the town and really suffering the next day from a stinking hangover and also from the realisation that we were ill all over our friend's car and that we were pretty obnoxious about it all, too. Maybe these things are necessary before we learn how to drink responsibly, how to have a few drinks and get a bit merry and also how to stop before we become an embarrassment to ourselves and to others.

We're all pretty good, at times, at blaming others when the computer develops some quirk that we don't know how to fix. We can all think, "the rubbish bin is pretty full but I know Mum will put it out later so I won't do anything about it". And we all think we're pretty good at taking phone messages until the number we've written down turns out to be the wrong number. But taking care about what we're doing, and thinking about and doing the things that need doing before we're asked to do them demonstrates that we have the INDEPENDENCE to make the DECISION to take the RESPONSIBILITY for the task at hand.

To some extent, being responsible means being able to think and to plan ahead. If a friend phones up and offers an exciting opportunity to go out on Tuesday, it's no good if you don't remember that that is when you have a dentist's appointment. It's important to have a calendar near the phone to write down all these things. Even better still is to have your own diary - and to be sure to use it - so that you can be responsible for keeping track of what you're doing and when - both social outings as well as other appointments. And the diary, too, can have all your important phone numbers in it. And that list can later include your pension number, your tax file number, your jobseeker identification number - all those things that need to be on hand when you're doing the rounds of job interviews or employment agencies that assist people with disabilities find a job. All you have to do then, of course, is be responsible for having the darned diary with you whenever you go out!

Kylie
It is very important to be careful with your purse, your EFTPOS card and your keys etc. Being responsible is looking after your own things. It would be pretty darned stupid if you lost your purse. I have to remember to take my diary and my phone with me when I go out. I now have a filing cabinet in my bedroom so I can look after all my letters and papers and things. Now Mum doesn't have to say, "What happened to - blah, blah, blah?" I think I'm better at looking after my papers than Mum is.