Comprensión lectora

Generally parents felt that their children were veiy similar to their other children in the way they expressed puberty and being a “teenager”. However obvious differences were also described. Differences were especially noted

masturbated, but guiding them to the bedroom or toilet had not been a problem. The embarrassment, fears (for e.g. masturbating in public) and humour in different situations were described by parents.

I: When do you think puberty actually startedfor him? R: When he started masturbating.

I: And how old was he then?

R: About fourteen again. Maybe a little bit before. I found it very difficult at first, (a) because you're only just about coping, hanging on by your nails, and then (b) you think, ‘Oh, fo r God's sake, not something else!' And that's a horrible way to be about something natural that gives pleasure... So, you know, you have to make sure he does it in his bedroom, because also I've got three girls in the fiat. So now I have to stop going into the bedroom and, you know, we've had some serious incidences where he's had a fit and fallen out o f bed and jammed himself but I can't go in and check in case he's in the middle because I've got to give him some privacy. You know, if you want to have a wank, have a wank Maybe it’s the nearest thing you’re going to get. I f it comforts you, boy, you do it. It's not a problem for me like that, I just feel sorry for him that he's never going to go on from that. You know, it would be normal with a normal boy and then he would progress to women or, men. But whatever. But that's not going to happen, s o if he's got that, then good luck to him. M 012

It seemed poignant that this mother was quite convinced that her son would never engage in intimate relationships. This would clearly have psychological and emotional implications for both mother and son. In this case the mother is also faced with the dilemma o f wanting to respect her son’s privacy and her fears around his safety due to his severe epilepsy.

2.1.3 ‘^Typical Teenager’*

Three of the parents felt that there had been no change for their child during their teenage years, as they did not have any opportunities to rebel and engage in activities commonly associated with becoming a young adult, at least within a Western culture, for e.g. going to the pub and staying out late.

Things haven't changed a lot except o f course that gradually her brother and sisters left home and these were difficult times for her. MOl

Parents also often expressed their intense sadness at their child’s lack of opportunities and isolation fi’om their peers and wider society.

I: So what do you think is very different about being a teenager for her?

R: The independence, the friends, she’s isolated, that’s the worst part for these young people, the isolation from normal society. Until we integrate fully in schools this is never going to change. Until there are no special schools and especially units, no specialist units and the people at the school gate are the same people she’s going to see in the clubs. Sweden, eat your heart out. They’ve got it right. One o f my son’s friends couldn’t believe that my daughter didn’t have a normal life. He didn’t understand why she didn ’t go to the youth clubs after school, didn’t have lunch with them. He didn’t even know what a special school was. Utopia... She has so much fhistration and she ’d see her brothers and sisters all going out, all dressed tqrtodo things and it used to break my heart. M 05

Some parents talked about the difficulty of not associating all difficulties to their child’s disability, but considering typical teenage changes as a cause.

You know she used to be really mega horrible sometimes. And a friend said to me, you know underneath all o f that she really is fust an ordinary teenager. But you tend to forget those things and because I had never got a problem with my other daughter...whereas X is a bit more fiery like me. And my friend she said to me one day I actually think that if X was a normal child, she would probably be quite fiery and she would be like you and she would, you know, be quite difficult, quite a strong character, which she is. But you see you forget all that. You don’t see that at the time, you just see this problem child that has got this disability and everything is blamed on the disability... And I ’ve thought about this a lot since and I ’ve thought to myself she’d be a right little rebel if she was normal. I f she was normal she’d be like ”cor I ’m not coming in at that time, no I ’m not doing that and completely different from her sister. ” M 07

Nearly all of the parents felt that their child with learning disabilities was still very much a “typical teenager”.

Exactly the typical teenager, going from one phase to another. The only thing he has left is stewing out late and piercing his ears and his nose because he can’t do it! M 09

Interests and activities described by parents were often quite similar and included: T.V. soaps, pop music, shopping, clothes, parties, sports and so on. Obvious differences between their children and teenagers without learning disabilities were also talked about.

There are little things, like when he was eighteen we went out to a restaurant for a meal and I said to him, ’Why don’t you have a beer? You’re allowed to now’. Whereas any normal

So he’s not realty into things like ...whereas a normal teenager can’t wait to legally go out and be able to buy a drink. But he’s not aware o f that sort o f thing. So things like that.

MOlO