Case study: learning independence skills

For young people with SEND, gaining independence skills is a journey. It starts with very simple choices, and over time they gain the experience of decision-making.

One parent's experience of helping her children with additional needs

'Accept that most steps towards independence - in fact, most learning - involves risk of some kind. Being able to manage risk and have some strategies for when things go wrong, is a big part of independence for both you and your child or young person. The nature of the risk will vary. Not only because of the task being attempted, but also the young person themselves and your own knowledge and anxieties. For some young people, 'getting it wrong' is a major risk to their well-being. That makes learning new things very hard. Of course the dividends are also greater, as the young person not only learns a new skill, but also learns that it is okay to struggle before succeeding.

Learning new skills has three stages

Modelling

'This is where I do the activity or task. This takes more thought than would at first appear. It can't be 'do what I say, not what I do'. No more dashing across the road because it is clear. We always wait for the lights. No more putting the washing on at midnight, and the ironing done before the kids are up. They need to see me doing it. Not only can they see what I do, but they realise it really isn't the end of the world to do your own washing,

Scaffolding

'Of course, it feels better to be successful, so I try to set up no-fail situations at the beginning of learning a new thing.

As an adult, my daughter now picks up her own prescriptions. We started together with me making sure she was with me when I did it. Then I'd be with her, but get her to give her name and show her NHS exemption card. This has her name on it, so it's a back-up for the shop assistant is she hasn't heard properly, or my daughter hasn't spoken clearly. Then we'd be in Boots and I'd suddenly 'remember' something I had to get in a hurry. I'd say, 'Oh, can you just go and get your prescription while I queue up for this?' I was in the shop if there were problems, but she was doing it.

'Soon after that, she could set off from home and do the whole thing herself. I get text alerts on my phone for when the prescription is ready each month. I hesitated to get it changed to her phone as I wouldn't know if it hadn't arrived. Then realised I could just forward it from mine as an interim measure. Pretty soon, I'll do the change with Boots and she'll be even more independent.

Stepping back

'For me, this is the trickiest bit. But it's also the most necessary.

'Going to a fast-food place with my daughter when she was maybe nine or 10 onwards, we would approach the server. The server would turn to me and say, "What can I get you?". I would give my order (modelling), then turn to my daughter and ask her to tell the server what she would like. She would give her order in what, to me, was perfectly clear language. The server would inevitably turn back to me and say, "What was that?". I would turn back to my daughter and say, "You said it right, honey. Just say it again, only a bit louder." But most times my daughter wouldn't speak.

'To her mind, she had tried and she had failed. She didn't know any better way to say the words and she wasn't going to risk another failure. This happened so often (not that we were there every day!) that it started to feel like a real problem. I wanted the server to make more of an effort to understand my daughter and treat her with respect. But I didn't know how to make that happen.

'Then one day I suddenly realised what to do. I went and sat down at a table, gave my daughter money, and said, "I don't really need anything at the moment. You go and order what you'd like." My daughter really wanted the food, so she was highly motivated. The server wanted to make the sale, so she was highly motivated. Not once in all the years since, has my daughter ever come back with anything other than what she set out to buy. Nowadays, she would order in any restaurant without hesitation.

Tackling independent skills one at a time

'Make a list of independent skills that you would like your young person to gain. Discuss the skills with them, and tackle them one at a time. Don't try to do lots at once. And consider breaking down complicated tasks into small steps. My daughter now goes to the hairdresser by herself, but it took lots of stages:

Me taking her and sitting with her while her hair was cut. Making encouraging noises and keeping her attention so she didn't squirm off the chair (years of this, of course)
Me taking her and sitting reading a magazine in full view, so she knew I was there
Me taking her and sitting reading a magazine back in the reception area
Me taking her, instructing the hairdresser and giving the money, then popping out to another shop while it happened
Me taking her to a 'queue for appointments' hairdresser, where she wouldn't have to make an appointment beforehand, which she would struggle with. Then leaving her to get on with it and come home by herself
Me promising to take her to the hairdresser, getting busy and continually failing to do it. Then getting a text from her to say that she had gone herself in her free afternoon, and was on her way home

'I confess that last step wasn't planned. It just happened, but all the steps we'd done before meant that it could.

Potential problems with gaining independence

'All young people are different. There are lots of less obvious potential problems with gaining independence.

'Sometimes what is independence to you and therefore a 'good thing', looks like 'she doesn't care about me or want to help me any more' to a young person, and therefore is a 'bad thing'. Equally, what they see as a benefit may not be on your list. I know that one of the things my daughter likes about independent travel, is that it means opportunities for independent chocolate buying. Weighing them up, I figure the first is worth the downside. But sometimes it's a close call. Giving our children the chance to make mistakes can often be harder for us than for them.

'I try not to make too big a deal of anything. If they know I am anxious about them succeeding, my children feel the pressure and may opt out.

Making the most of technology

'Make the most of technology. Smart phones have been brilliant for us as a family of one adult and two young people with additional needs.

We share a calendar on our phones and computers. It has a colour for each of us. It is set up so that while I can change and see everything, my children can see everything but only change their own appointments. If not, my son might conveniently 'lose' my appointments, in favour of his need for a lift somewhere!
When they were younger, in return for paying for their phones, I insisted on knowing their passwords. It meant I could keep an eye on friendships and internet use and put stronger measures in place if necessary
In the past, I made full use of the 'parental controls' on computers. For example, they turned off at a certain time no matter what
My daughter doesn't hear too well in a busy shop or street so there's no point in phoning her. However she's great at texting and seems to be able to feel her phone vibrating through a backpack and several layers of clothes. For some young people, talking would be better than texting
Both my young people can now use Google maps on their phones. They can find their way on foot somewhere, and on buses too, with a bit of practice
My children are still hopeless about letting me know about future events, or giving me paperwork handed out in a class or activity. However if they use their phones to take a photo of a poster or flyer and then send it straight to me, we stand some chance of getting there
My daughter isn't confident about telling the time. However she does know that it takes her about half an hour to walk to some events. She can put an alarm on her phone for when to set off. She loves not having to have me remind her
With my children's knowledge and permission (which might be withdrawn any day now!) I can also track their phones, so I can see where they are. I don't use it much, but occasionally it's handy to be sure that someone has caught their bus or really is on the way to college...
My son's social communication challenges mean that in the past he often got into trouble on social media. He wasn't able to distinguish banter from bullying, or friends from 'friends'. He allows me access to his Facebook and Messenger accounts so that I can help him head off trouble if it looms. That's increasingly rare but still sometimes useful. It enables me to protect someone who is nominally an adult, but still very vulnerable without him feeling restricted

'Basically, smart phones and computers, although they also present some hazards, have enabled my children to have more freedom.

Workarounds to help your young person

'If a skill is tricky to learn or maybe won't ever be fully possible, there may be workarounds that help your child to feel more independent anyway. For us:

My daughter struggles with money and change. This usually means that I give her 'too much' money for something, so she isn't worried about not having enough. But then the remainder gets spent on chocolate. At lunchtimes, a supermarket 'meal deal' is brilliant. She can take the exact money but still have lots of choice without having to work out if she can afford it
We haven't cracked tying shoelaces yet either. My fault for not setting aside time to keep practising - I'm sure she could if I did! But hooray for Velcro. Who needs bows?
We're working on a smart watch to work with her phone. She's wary, but we're getting there

Final words

'And finally, in my family we've reached the stage where in order to increase my young adult children's independence, I need to increase my own. It's all too easy to carry on being a mum in more ways than are really necessary. So for the first time in twenty years, I've signed up for evening and exercise classes and taken a part-time job. It's working wonders for all of us.'