JayneM

Hello there I should have done this before I posted elsewhere but desperation got the better of me! I'm a Mum to a 21 year old son who was diagnosed at an early age with Semantic Pragmatic Disorder (now renamed as Pragmatic Language Disorder?). I'm on the forum as we've reached a stage where things must change in my son's life (job, interests etc) and husband and I just don't know what do for the best. I work as a teaching assistant with young children with a wide range of learning disabilities but really stuck with my own child! Having read some posts on the forum, I realise that it's just good to know I'm not alone.

The issues described here sound v similar to those we experience with our son, age 21. Forgive me, it's not helpful to you but your post has given me some comfort just by knowing we're not alone. We also have to make some decisions about our sons future. He's been working for his Dad since leaving school and has come a long way but, for many reasons I won't dwell on right now, its time to make some changes. He has no motivation to do anything for himself so I'm looking for alternatives.

Mihaela, thanks so much for your reply and my apologies for leaving it this long to reply. Work, Christmas and a million other things just got in the way. I DID receive two other replies but they don't show here, perhaps my post was moved to a more appropriate section on the board and that's why they're not here? I wonder if any of this will also sound familiar. He doesn't seem to 'think' beyond the immediate situation which causes lots of problems (I can't descibe it any clearer than that) - today I'm sad to say he made a mistake in work that will cost us dearly. He just doesn't think beyond the immediate situation. It frustrates us immensely because on the one hand he appears very capable but then he will make huge mistakes because he just doesn't seem to think. It's time to get him into another job, but it worries me so much. Thinking of contacting someone, like an organisation for adults with ASD etc. So scared for his future,

Please forgive me if this is in the wrong section. This post may well sound like I'm just venting, but honestly, I need some support and advice. The last time I wrote something similar to this was about 16 years ago and I felt pretty much as I do today back then. This is pretty long so thanks in advance for your time. I have a 20 year old son who was diagnosed with SPD at around 5 years of age. Having got him through school and a few years of working, we now find ourselves at a point in our sons life where we feel lost..... Before I sound too negative, I must say that he's grown into a pleasant young man. Friendly, doesn't drink, doesn't smoke, but then he rarely leaves the house other than for work. He has no friends (which doesn't bother him in the slightest) - his closest confidante is his younger sister. His longest, most intense and seemingly happiest conversations are almost always with her. What will happen to him when she goes to uni? He's always struggled with concentration, social interaction etc but has overcome his social issues in many ways. he did a Duke of Edinburgh Award which gave him some confidence and after some years of Saturday work in our computer shop, he now works full time there and we feel he's made huge strides in that he now serves customers, books in repairs, answers the phone, helps customers with their technical issues, he even does the sales books at end of day etc - in fact, there are often times when he is the sole person carrying out these duties. In essence, he's looking after the shop (albeit while a technician is working an adjoining room). He could not be left totally alone as he can't deal with the unexpected or unusual. eg. someone conned him with a dodgy credit card recently and he let them walk out with a repaired computer without payment. On the other hand, as he appears outwardly to be quite capable and customers who would never guess as to his diagnosis have often made lovely comments about him and his work and one even told me "that young man's got his 'finger on the button' hasn't he?" (!) but having said all this, I wouldn't be here if there weren't other aspects to his life which we find...... frustrating (for want of a better word). At school, I often received phone calls to say he hadn't handed in work given to him months earlier (yes, of course I asked teachers to let me know what and when work was due but the reality isn't always ideal). In fact, unless I sat down and did the work with him, it simply wasn't done. I could have told you vast amounts about the history of music cos I did all the essays with him He'd basically 'stick his head in the sand' and hope it would go away. I often felt that he relied on his support so much that he lost any inclination for independent learning. This does NOT apply to learning to play the drums or computer games, both of which he does well - in fact the taught himself to play drums after having a couple of initial lessons). He seems to take the view that as long as he keeps his head down, he'll get away with doing the bare minimum and just playing computer games (!) every evening and nothing else. He'll take the flak from hubby and I, say he'll try to do more, and then do nothing. He has a voluntary job assisting with a local radio station - where he does only what's required, and no more. He's been asked to carry out a few tasks outside of the normal hours (just a little bit of research) - he hasn't done it. Again, I would have to sit down and do it with him. The DJ (a friend of ours) wants him to take over presenting - yeah right (and gives me a hard time cos my son isn't making any effort to do that?!) Now and then, he will surprise us..........like getting up early and walking to the shop and opening it up. He won't tell anyone he's doing it, we just get up and find he's gone. He walks or runs (!) everywhere, refusing to catch a bus unless his sister is with him. His Dad wanted him to go the job centre and find another job. I thought this was laughable. Experience has taught me that there's no way our son would walk in that place let alone speak to someone without one of us being with him. Hubby's getting frustrated and angry and thinks we should aim higher. Each evening this week he's told me of the latest things that our son did that upset him and asks what can be done about it. My parents are asking me all the time what the future holds for him, what will he do, what plans do I have for him? The man my son works with at the radio station complains to me about our son and tells me I've done too much for him but he doesn't know anything about learning disabilities, let alone my sons diagnosis. Today he was asked to write a short piece for my husband about what he thinks he should do in his current job, the changes he should make to improve certain situations - and was given the day off to do it. I came home at 6pm and he's done none of it. He tells me he did the dishes (which is true) which means he just messed around on his computer the rest of the day. A family member has two sons with similar conditions. Both of those children have good jobs, socialise etc (even tho one of them was predicted to never advance beyond a certain level of learning and self care). I know we shouldn't compare, but I do and question and doubt myself constantly. Now for the clanger........... before I started learning about his condition I felt totally helpless and ineffectual on my my sons life but, armed with knowledge, I adapted our communication accordingly, liaised with various agencies and his schools, carried out the speech and language exercises that he was given etc, etc. I even advised the school on strategies when they were struggling. I did it all. Family members acknowledge that without the intervention I carried out, our son would not be where he is today. My own experience eventually contributed to my training as a teaching assistant and I now work in my sons former primary school in a unit for children with various learning disabilities! In fact, should know what I'm doing with my son, right? NO, I honestly don't know if I should expect more, or if we're expecting too much. I DO think he needs to have a job working for someone other than his Dad so that he experiences real life (and even getting sacked!), but I will have to find him that job. If I don't do something, he will continue exactly as he is. appreciate that many of the issues we're facing are typical of many teenagers (!), and indeed, I hoped that my son would deal with some things as he matured (and indeed in many ways, he has) but what now? He's overcome some issues cos he was forced to do so, but surely there are limits? Anyway, this was long and I'd like to thank whoever reads it for their time and patience. I'd greatly value and appreciate the comments of others but be gentle please,it's been a long time since I felt this quite this helpless and I'm feeling pretty fragile. Thank you.

Please forgive me if this is in the wrong section. This may sound like I'm just venting, and that's probably partially true but honestly, I need some support and advice. The last time I wrote something similar to this was about 16 years ago and I felt pretty much as I do today. Thanks in advance for your time. Our son, now 20, was diagnosed with Semantic Pragmatic Disorder at around 5 years of age. Having got through school and a few years of working, we now find ourselves at a point where we feel a bit stuck..... Before I sound too negative, I must say that he's a lovely young man with a great sense of humour, (even if he IS driving us nuts at the moment). He's always struggled with concentration, social interaction etc but has overcome some of his social issues. He works in my husbands shop and we both agree he's made huge strides in that he now serves customers and looks after the front of shop while a technician works in an adjoining room. He isn't left totally alone as he can't deal with the unexpected or unusual but customers have often made positive comments about him and his work and one even told me "that young man's got his 'finger on the button' hasn't he?" (!!!) but having said all this, I wouldn't be here if there weren't other aspects to his life which we find...... frustrating (for want of a better word). At school, he never did homework unless I did it with him. He'd just 'stick his head in the sand' and hope it would go away. As much as he needed the support, I've often felt that he relied on his teaching assistant so much that he lost any inclination for independent learning. This does NOT apply to learning to play the drums or computer games, both of which he does well - in fact the taught himself to play drums after just a couple of initial lessons. He seems to take the view that as long as he keeps his head down, he'll get away with doing the bare minimum and just playing computer games (!) every evening and nothing else. He has a voluntary job assisting with a local radio station - where he does only what's required, and no more. He's been asked to carry out a few v small tasks but he hasn't done them. Again, they won't get done unless I sit down with him. The DJ (a friend of ours) wants him to take over presenting - (yeah right! Like that's going to happen) and gives me a hard time cos my son isn't making any effort to do that and tells me and my son that I've done too much for him so it's my fault he's like he is?!) Now and then, he'll surprise us..........like getting up early and walking to the shop and opening it up. He won't tell anyone he's doing it, we just get up and find he's gone! He walks or runs (!) everywhere, refusing to catch a bus unless his sister is with him. I feel a bit besieged at the moment. Yesterday, y husband told him to go the job centre yesterday and find another job. I thought this was laughable. Experience has taught me that there's way our son would even walk into the place alone, let alone speak to someone. Hubby's getting frustrated and angry and thinks we should aim higher. My parents are asking me all the time what the future holds for him, what will he do, what plans do I have for him? Today my husband asked our son to write a short piece about his role in his job and the changes he should make to improve certain situations - and was given the day off to do it. I came home at 6pm and he's written 3 lines. If he DOES write something, he writes over and over it as though he switches off. When our son was small and before I started learning about his condition I felt totally helpless and ineffectual on his life but, armed with knowledge, I made great efforts to help him and other people acknowledge that without the intervention I carried out, our son wouldn't be where he is today. The issue now is that I honestly don't know whether we should expect more, or if we're expecting too much. I DO think he needs to have a job working for someone other than his Dad so that he experiences real life (even if it means getting sacked!). We'd hoped our son would mature and find at least some direction, however small. but any form of 'growing up' seems to be out of reach to him. Anyway, this was long (even after I edited it!) and I'd like to thank whoever reads it for their time and patience. I'd greatly value and appreciate the comments of others but be gentle please,it's been a long time since I felt this quite this helpless and I'm feeling pretty fragile. Thank you.