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JayneM

Semantic Pragmatic Disorder - a mum at end of her tether

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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.

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Sounds a bit like me.

We differ.

I have been thought off as somewhat of a genius also as an totally insane one.

My time line is coming to an end.

However if I can be of some help, do please inquire.

 

Ian

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I think it's a problem with motivation for him. For me going off gluten and dairy helped me to become motivated.

 

Will he change what he's eating or using? Or would he try supplements like omega 3s?

Could it be because he's feeling socially pressured and when the pressure is off then he can cope with a situation?

 

Hope these pointers help?

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