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Talking through the door

Jenny Butterfly

Well, I am not even sure whether I should be posting here as we are still no further forward as regards a diagnosis and, from my perspective, our son's problems seem to straddle various labels.  But I feel desperate.  He is so alone.  No friends, no further education, nothing outside the house, very little inside the house (food and the computer). He can go for weeks without going out, then, suddenly, switches to being out from the early hours (5 or 6 am, while we are asleep) and returning mid afternoon, going straight into his room and not sayng anything.  This is what has happened for the past couple of days and I don't even know whether he has eaten. 

Communication is extremely limited and generally we have adopted an easy, person-centred approach, respecting his privacy and at the same time making it clear we support him.  He is 21, after all. 

But I find this level of isolation extremely worrying.  Moreover, we have now been in this stalemate situation for a couple of years and we're at our wits end as to what to do.  I basically read and read but learn nothing of any help and then do a lot of worrying.  None of this leads me anywhere. My gentle, tentative efforts to offer support are rejected, my attempts at basic conversation just blanked or rejected.  I sometimes resort to a couple of simple questions through the door and get monosyllabic answers. 

I don't see what parents are supposed to do and, even when we get to see a professional (the early intervention team up til now and the autism team in July - at the soonest) they don't seem able to offer any more.  Is this how life just has to be?

Parents

  • I've re-read this a few times, trying to get a picture of what's going on for all of you. I was hoping to find something useful to say, but I've struggled to, and I don't like wasting time on useless chatter.

    I tried remembering my own youth, to try and get a picture of where your son is now. It seems to me that the big parts of my life were that I was unrestricted (you can't tell me what to do...) and that I had ready access to those things I needed. My home was kept clean, so were my clothes, food was provided, often on demand, I could go where I wanted, and I lived in a welter of total confusion. One of the most confusing things, when I think back, was just how much my parents failed to challenge some of my more outrageous behaviour. Basically, I could 'get away with anything', so I did. I didn't know any better because there were no expectations of me that I should...

    I had only the vaguest grasp of real world living, and absolutely no idea of how to fend for myself. I didn't even have any grasp of how that might be necessary. Consequently, with my first foray into the big world, I collapsed, spectactularly.

    I don't know if this is right, but I wonder if some of his behaviour comes from your expectations of him? The way you speak reminds me of my own experience when you say that you are 'relaxed' and respectful of his personal space. If he doesn't do the same, but rather appears to be taking advantage of it, perhaps it's time to let him know that this is a two-way street?

     I admit that this is me struggling to be helpful, so please don't think I'm criticising your parenting, I'm more thinking that perhaps it's time to go to the next level up, and prepare him for as much functional independence as he's capable of. If you look at him as if he's 'any' person of his age, what would you expect that person to be able to do?

    Naturaly, we all have different pictures of what that is, but mine would certainly be of someone who knows how to look after themselves as a grown adult. With my own kids, they were younger than that when they knew how to do those things that are necessary for self maintainance, but then I never saw them as anything other than Junior Trainee Adults, with me as their teacher until it came time for them to leave the nest.

    I don't know if that gives you a different view or any new thoughts, you know your own circumstances best and I might be talking rubbish, but I felt compelled to throw something in the pot because I can see your anguish and frustration. If nothing else, I hope that sharing it has helped.

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  • I've re-read this a few times, trying to get a picture of what's going on for all of you. I was hoping to find something useful to say, but I've struggled to, and I don't like wasting time on useless chatter.

    I tried remembering my own youth, to try and get a picture of where your son is now. It seems to me that the big parts of my life were that I was unrestricted (you can't tell me what to do...) and that I had ready access to those things I needed. My home was kept clean, so were my clothes, food was provided, often on demand, I could go where I wanted, and I lived in a welter of total confusion. One of the most confusing things, when I think back, was just how much my parents failed to challenge some of my more outrageous behaviour. Basically, I could 'get away with anything', so I did. I didn't know any better because there were no expectations of me that I should...

    I had only the vaguest grasp of real world living, and absolutely no idea of how to fend for myself. I didn't even have any grasp of how that might be necessary. Consequently, with my first foray into the big world, I collapsed, spectactularly.

    I don't know if this is right, but I wonder if some of his behaviour comes from your expectations of him? The way you speak reminds me of my own experience when you say that you are 'relaxed' and respectful of his personal space. If he doesn't do the same, but rather appears to be taking advantage of it, perhaps it's time to let him know that this is a two-way street?

     I admit that this is me struggling to be helpful, so please don't think I'm criticising your parenting, I'm more thinking that perhaps it's time to go to the next level up, and prepare him for as much functional independence as he's capable of. If you look at him as if he's 'any' person of his age, what would you expect that person to be able to do?

    Naturaly, we all have different pictures of what that is, but mine would certainly be of someone who knows how to look after themselves as a grown adult. With my own kids, they were younger than that when they knew how to do those things that are necessary for self maintainance, but then I never saw them as anything other than Junior Trainee Adults, with me as their teacher until it came time for them to leave the nest.

    I don't know if that gives you a different view or any new thoughts, you know your own circumstances best and I might be talking rubbish, but I felt compelled to throw something in the pot because I can see your anguish and frustration. If nothing else, I hope that sharing it has helped.

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